Complex Facial Pain Case; TMD, Trigeminal Neuralgia or NICO?
It’s sadly the case that many of the patients I see on referral for chronic pain conditions have been all around the houses before they finally reach me, so I wanted to share a report from a patient with you that arrived by email this morning.
I don’t claim any extraordinary powers, but what I do do is to always approach every case as if it was my first, putting myself in a “beginner’s mind” state, then take a full and thorough history, carry out an equally thorough examination and come up with a preliminary diagnosis.
Having a “beginner’s mind” involves re-engaging in a way that can be difficult for people to do who have been doing the same job for many years. It’s all too easy to go into a kind of cruise-control mode because your mind has learned a skill so well that it means that most of the time your conscious mind can be off thinking about something completely different while still doing the job pretty well most of the time.
When it comes to trying to help patients who have already been in pain for a long time and have seen numerous practitioners, specialists and professors, you need to be fully engaged and in “learning mode”, as if doing it for the very first time. This is always going to be a case we can learn from; if it was simple someone else would have diagnosed it and fixed the problem ages ago, so we have to be in a learning mode, which invariably involves LISTENING to what the patient is actually saying and believing them when they tell you what their symptoms are.
Many patients’ symptoms don’t fit into neat diagnostic criteria and it’s very often the case that other medical and dental specialists will have jumped to conclusions without engaging their “beginner’s mind”. In a busy day, with a full list and a waiting room full of patients, it’s much easier to jump to a conclusion than it is to really get to the root cause of a problem; and for many doctors it’s much easier to reach for the prescription pad and disguise a symptom with a drug than it is to reach a correct diagnosis. Indeed, what often passes for a diagnosis these days is really little more than a description of a symptom converted into Latin or Greek and repeated back to the patient in a knowing tone.
So, bearing this in mind, here is the letter I received this morning:
Up until December 2010 I was a normal healthy 44-year-old woman, with a lovely husband 2 children and 2 lovely stepchildren, but in that December everything changed. I had been feeling unwell for a short while but could not put my finger on what was wrong. A few strange symptoms, which started off quite mild, became so bad I honestly thought my life was over!
About 6 weeks earlier I had noticed a tingling sensation in my mouth at the left upper side, which just would not go away. I also had a severe twitch in my eye that would not stop. I thought I was a little stressed as there was a lot going on at work with redundancies and although it never effected me I was very upset about the people who were involved as I was very close to them, so I put my stress problems down to that.
I had had some teeth extracted following failed root-canal treatment and a severe abscess on the lower left side, leaving me no molar teeth in that area. On the advice of my dentist, on the 18th December 2010 I had a titanium dental implant inserted into the first molar area. There were no complications I was aware of and everything seemed to be healing well.
A week later I started using a teeth-whitening kit, which I had obtained from my dentist. Initially there was no problem, but after 3 nights’ use I went to bed and as soon as I laid down the most horrendous pain shot through the roof of my mouth and out of my left ear. I assumed that this was something to do with the whitening solution and immediately washed it out. The next day I had the most dreadful pain in my left ear, which I thought must be an ear infection and went to see my GP. He said he could not see anything but that I had a rash on the roof of my mouth but was unsure what it was, so he suggested that I go and see my dentist again, which I did. The dentist said it looked like I had shingles in the roof of my mouth. The rash went all the way back and this is what he thought was causing the pain in my ear and face.
Over the next couple of weeks I felt that I had flu I was run down had no energy and barely managed to get through Christmas and New Year, I was so unwell that on the first day back to work on the 4th January I had to come home, I was backwards and forwards to my GP who said I had a virus and to rest. Unfortunately I started to get horrific pain in my face that I described as electric. I had pain in my jaw, my ear and my face on the left side, and if cold air got in my ear I was in utter agony.
After having tried various drugs from my GP (Gabapentin, Amitriptyline, Pregabalin) he eventually sent me to see a consultant neurologist, who thought that I was suffering from Trigeminal Neuralgia. He gave me an MRI (magnetic resonance imaging) scan of the neck region, which apparently did not reveal anything untoward. The neurologist then prescribed Tramadol and Baclofen.
Unfortunately I suffered severe side effects, which made me feel even worse. The neurologist then suggested I see a maxillofacial surgeon, who suggested that it was not classic Trigeminal Neuralgia but Atypical Facial Pain. He also said that I was suffering from TMD (Temporomandibular Joint Disorder or Dysfunction). He had already spoken to my dentist, who confirmed that I wore an NTI-tss splint at night to control my teeth grinding (bruxism). The maxillofacial surgeon advised me to get a mouth guard made from my dentist to see if this would help and also suggested taking Carbamazapine. Once again I had a severe reaction to the medication, but unfortunately he did not seem to believe what I was describing, to the extent that he suggested I had read up on my symptoms on the Internet and was more or less making this up. I cannot tell you how distraught I was at this unfair accusation.
At this time my husband had to practically carry me into the clinic as I was so ill and in so much pain. I went back to my dentist who made me the splint (a hard acrylic Stabilisation Splint or Tanner Appliance), which he wanted me to wear from 3 months. I did wear it, but made no difference at all. By this point I was in such considerable pain I could not do any normal daily activities. My dentist tried nerve blocks in various places in my mouth to see if the pain went away but it did not and that reassured him that the problem was not anything to with any of my teeth. I was in such pain that my mother- and father-in-law, who live in Spain, had to return to the UK and move in with us to help look after my 8-year-old daughter.
The pain was so bad that I was spending all my time at the GP practice begging for some help. He put me in touch with a pain specialist, who saw me and said that he had spoken to all parties concerned. Because I had major pain in my neck as well as the head and face he gave me radio frequency ablation to try and get rid of some of the pain there, and he also gave me acupuncture but to no avail.
By this time I was barely functioning and was on the way to see a chiropractor when I nearly passed out in the car due to the pain and my head felt like it was exploding. A friend drove me straight to my GP, who arranged for me to be admitted to the local hospital. I stayed in hospital for 12 days, having various tests done. I had another MRI of my head as the last one was just my neck, I had a jaw x ray to make sure the implant was ok and was also placed on a 5 day course of IV steroids, together with Lamotrigine.
Unfortunately, whilst in the hospital, I started to have panic attacks, which I had never had before, and the neurologist said it was probably because my body had been through so much. He put me on Citalopram (another SSRI drug). After 12 days I was discharged and came home, although I was still not feeling any better. In fact I was feeling very unwell indeed, but carried on taking the medication. During this time I became increasingly manic, was suffering from severe anxiety, major sleep loss and loss of appetite to the point that I lost 2 stones (28 lbs) in weight.
By this point I really could not function at all and my GP contacted the Mental Health Team who diagnosed that I had panic disorder. I was then under their care and the medication was increased, which made me even worse. I was so bad that they were about to take me to a secure unit to treat me, but thank goodness my husband would not allow it. He asked if I could be having a reaction to the medication as I had had a reaction to every medication that they had put me on. My husband spoke to the consultant and he realised that I might be having a rare reaction and suffering from Serotonin Syndrome from the Citalopram. They immediately took me off the drug and replaced it with Venlafaxin so that I did not suffer from withdrawal symptoms. Within 48 hours of coming of the medication I was completely back to normal mentally. The consultant said he had never seen such a reaction to the medication, unfortunately 3 weeks later the same symptoms returned with the Venlafaxin, so they sent to me to hospital to have IV Diazepam to stop the spasms of my arms and legs.
During this time the pain that I had been suffering with originally disappeared, although I am not sure at what point as I was so out of it on the medication that I did not even notice that it had gone. They took me off all anti-depressants and said that I could not take anything that had SSRI components ever again.
I went back to work, booked a holiday to stay with family in Spain, was feeling completely better and finally back to normal. While I was in Spain though I had toothache and needed emergency dental treatment on the right hand side of my mouth. The dentist there diagnosed that I needed attention to a root canal, which was all done satisfactorily with a temporary dressing. I had no problems with the treatment and the dentist was brilliant, so I was able to continue my holiday with no problem whilst taking antibiotics.
On my return to England I went back to see my usual dentist, who was on holiday, so I saw another one, who cleaned the area out again. He kept asking me to open my mouth wider, but I was finding this difficult because my jaw was so painful. He finished the treatment and I went home, but the very next morning I woke up in agony all my left hand side was on fire and I had the most horrendous burning pain all over my scalp and forehead.
I contacted my GP again, who said that I needed to go back to the pain specialist. After a long discussion he suggested that it was some form of nerve damage possibly from the shingles and the dental treatment had set the pain signals off again. He suggested a Stellate Ganglion Block, which I had, but unfortunately this did nothing and he also accidentally punctured my lung in the process. He then put me on liquid morphine for the pain, but again I collapsed in agony and had to be rushed off to another hospital. They said I had a reaction to the morphine. He then put me on Ketamine, but to no effect and then he tried Nabilone. All these drugs did was make me sick and sedated.
He then said he would try a Phenytoin infusion to see if this would work, but again this made no difference. I saw him again and he suggested one last drug, oral Mexitil, but after taking this I spent 2 days being sick with severe stomach cramps and unable to sleep. I contact him and he told me to stop taking them and he booked me in for some hypnotherapy to try and help me with the pain. He also then arranged for me to have IV anaesthetic infusion at the local hospital, but once again this did nothing to help.
This doctor the retired in December 2011, but he a arranged for me to have a consultation with a professor who specialises in nerve pain at the Walton Centre Neuro-care clinic. After spending time with him his conclusion was that the pain was multi-factorial. He stated that I was suffering from an alteration of the body’s pain ameliorating system, caused by a previous neck injury from a car accident in 2005, later developing a herpes simplex infection which has probably has been such that the inflammation has extended over the central nervous system side as well as the temporomandibular joint.
It was at this point that my dentist advised me of a dentist who has an interest in the management and treatment of headaches and facial pain by the name of Andrew Lane who is based at Apollonia House in Saddleworth, near Manchester.
To cut very long story short, Andrew more or less saved my life. On my first visit he took a detailed history, carried out an extensive examination of my mouth, jaw joints and the muscles of my head and neck, took an x-ray of my mouth and jaw and later advised me that although I did have certain dental problems he said I was also suffering from osteonercosis cavitations in 2 areas of my mouth. He performed surgery on the lower left area, which is where I had originally had an abscess that resulted in losing the teeth there, with thorough debridement (cleaning) of the involved bone.
I had this done three times on my lower left side, which is the area which I had been having horrendous pain and also the on the upper right. After the first debridement I did in fact feel a lot better and have continued to have less facial pain than before. I cannot tell you the difference I felt after seeing him, for the first time ever I thought someone truly believed what I was saying and he gave me all the facts regarding the condition.
I can honestly say that I cried with relief that I was going to get better, from the first day of seeing Andy to this day I have felt that I will beat this awful condition. I do still have problems that I have been left with from the shingles i.e. burning in my head and forehead, but have learnt to manage this by wearing hats (embarrassing at times) but know there are people a lot worse off than me. Even though I know I will still need more treatment, and I don’t know when I will be at the end, I do know that without Andy and his belief in what he does I would not be able to write this to you.
So I will end this saying that life is good now; not how it was before December 2010 yet, but better than 2011 and by 2013 who knows where I will be, but I am stronger and will not let this beat me. If I believed the maxillofacial specialist and let myself think it was all in my mind I would not be here, and that is being honest. I was living in a bubble of pain day in day out and could not see a way out, but now I can and can only put that down to my amazing dentist who put in touch the most amazing man, Andrew Lane. I hope I can add further posts as and when I can, for anybody out there suffering like this please take hope there will be an answer you just need to keep looking!
It’s worth including this lady’s panoramic radiograph at this point, so that those of you who are trying to put the patient’s history into some kind of clinical context can see what my starting point was.
Pre-operative OPG Radiograph
There are several salient features to this radiograph, but oddly none of these had been remarked upon by the maxillofacial surgeon. The most obvious problem is the new implant in the LL6 region, but if you look closely just behind that there is the shadow of what was the LL7, which had been the site of a very severe abscess (with gross facial swelling) when a root canal filling failed some months before the original pain stared. There is also a shadow relating to the LL8 area, extending towards the ramus of the mandible. Both of these proved to be significant.
The other notable feature for those of us who are looking at the role of TMD is the flattening of the right condyle. I have a feeling that this wil become more significant later once we have dealt with the bone pathology.
Another feature that leaps off the radiograph to me is the retained root at UR6, but this seems to have been missed by everyone else so far in the story. As it turns out, despite trying to save them, as well as UR6 root we have also had to extract the chronically infected UR7 and UR3 failed root filled tooth and the patient now wears a denture while we allow healing to take place.
This is the cavity I found in the bone in the LL7 region:
NICO site LL7 region
I have called this a NICO (or Neuralgia Inducing Cavitational Necrosis) as this seems to be the best description of a) what it is and b) the problems it has caused. These bony lesions seem to be much more common than have so far been reported in the literature, but diagnosing them is fraught with difficulty and potential danger – none of us wants to drill holes in jaw bone just on the off chance of finding them, so we do need to be reasonably confident that other possibilities have been eliminated first.
We are far from finished in this particular case, but hopefully this article will stimulate some thought and discussion and we can report back as things progress further over the coming months.
I look forward to comments.
Dr Andrew Lane
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This descibes me exactly have been on all these medications and have been fitted with a dental splint.I have atypical facial pain on the left side only.Am at my wits end have had it for 25 years and have tried everything that i know of.Pain specialist etc.Am on seroxat withdrawal at the moment and going through hell
Has anyone suggested jaw infections as a possible cause Diane? Any history of an extraction, dry socket or infected tooth around the time it started?
That’s what happened too me 7 years of hell now they trying too saying I’m thinking all..even though have documents too say diff and now have 2 teeth in gum never knew was there my life is hell Angela
If I could send my ct scan for you to look at that would be great.. I live in the us and any info you could give about some one seeing my case would be great..
Feel compassion for the patient having to go through her nhs journey having my own horrendous journey.
Good news that your treatment has helped Andy.
Are any other methods used to help the area heal after extracting the infected necrosis and what is used to kill any parasites/bacteria/infection in the cavity.
It has been suggested that necrosis/infections could leave fungal issues behind, are there any binders that could reach these areas or are there any treatments that can deal with these ie.fungal or mould medications ?
Hi i contacted Andy he gave me a ladys name in area I live not far, now my condtion has lead me too loose all my teeth deviated spatum rhinitis of sinus perforfotred ear drum cant jew poor dentures inpacted teeth roof of mouth six stones in Wight isolation bad eyes waiting too see top consultants in North West as Tn ganglia has casused horrific situation and affected my gut and bowel I know quite lot as suffer hoorific I tied andy he pushed too lady who was not sufficient enough 😢 yes infected root canal should ban them cause root too cause damadge
I have been in the almost exact same situation but NICO treatments did not work for me. I have lingual nerve damage.
how did you get lingual nerve damage? Lisa (305)502-6382 cell please let me know, as I think I have this and cannot find right person to diagnos it.
Hi Andy, great case and congratulations. Unfortunately I think this is NOT an infrequent occurrence in many health conditions, not just chronic pain. Dr Janet Travell once said to me that if you listen to your patients and understand the basics of anatomy, physiology and biochemistry, they will often tell you wants wrong with them and give important clues about how to treat them. You just need to listen and know which questions to ask. Well done. Hope you are well. warmest regards Ron Ehrlich
Hi Ron, thank you very much for your kind comments. Long time no see, hope you are keeping well. Couldn’t agree with you more. The work of Janet Travell is something I refer to (no pun intended!) on a daily basis, don’t know what we would have done without her insights. Warm regards, Andy
Agree they don’t listen just walk away and pill you up
OH MY GOD, this lady must had the most misrable year in her life, I cant belive it. she must be in so much pain and nobody helped her, thanks god that she has not commited suicide.
Well done Andy.
Regards
Helmi
Hi. I am the lady in question, and reading this made me almost cry, it is strange reading about yourself and realise how far you have come.
To Diane I urge you to get in touch with Andy. I dont know where you live, but I travelled 140 miles round trip to see him and would have travelled another 140! I am getting better and am back at work full time now, which is something I could not envisage doing.
I have bad days and good days, but even the bad days are nothing compared to what I have been through in the past. My life has changed, but it makes you realise what is important in life when you have been in a “bubble” of pain. I am just thankful someone out there sent me to Andy.
Helmi, if you read this trust me there was many a time when I did feel like giving up, but I have a loving family and had to keep going for them no matter how hard it got. We all got through it together. I hope Andy keeps you updated on my progress and this article helps other people that may be suffering from the same symptoms. 🙂
Dear Amanda, I am enjoying reading your story. I have been in pain for over 9 years. I had a root canaled tooth pulled 8 months ago, and I am still healing from the badly extracted tooth behind, from 9 years ago. I have felt very rough many times. I have had to stop working, but hopefully I will get better soon. I have had to travel 200 Km to see a dentist who is helping me. I also see a reactive Kensiologist who works with the dentist. I hope you have had some more improvement
Hi my name is Angela. Trust you are well .having read your story I have been same as you since 2010, my life is isolation and family breakup it’d terrible no one believes you, now its 20199/ I have becr worse meds after meds I contactef any.hr offered help waiting too hear back
Tc Angela
your story is so inspiring to me. I just finished getting total upper bridge for several teeth put on and the pain/pressure has been unbearable. I am so glad you got help and kept looking for solutions! I’m still early in my healing journey but i know now I”m not alone in this pain cycle. Hope you continue to get better . I live in Canada, so may have to look for a specialist here.
all the best!
I am in Toronto.If you find someone can you please share their contacts with me?Or maybe we will have to head to England.6 years and can’t believe that if I live to the age of my parents I have only 15 more yeasr left to live with this.Such a sad way to look at this precious life we have.
How do I get drs to help. I’m two years in and so weak cant drive anymore. No SD urgent will touch I had do msny blood tests scar tissue in veins can’t even get bloodwirk. I look like I’m 90. I used to be non stop. I can’t take much more pain is so bad!
Hi i contacted Andy he gave me a ladys name in area I live not far, now my condtion has lead me too loose all my teeth deviated spatum rhinitis of sinus perforfotred ear drum cant jew poor dentures inpacted teeth roof of mouth six stones in Wight isolation bad eyes waiting too see top consultants in North West as Tn ganglia has casused horrific situation and affected my gut and bowel I know quite lot as suffer hoorific I tied andy he pushed too lady who was not sufficient enough 😢
Hello I have had facial pain and headaches for years. I have splint that I have worn for 3 yrs . Pain is getting worse radiating into my ear and down my left side of neck. My dentist says my bite is perfect she doesnt want to touch it and the oral surgeon who said he treats TMD did a in depth x ray and said must be muscular. Ive done muscle relaxer and meds for inflamation and nothings worked. Do you happen to know anyone in Texas that may be able to help me.
Elaine, I just posted my story on this blog. I live in Texas. The oral surgeon who took care of my cavitations was Dr. Nunnally in Marble Falls, Texas. The pain doctor who suggested getting the splint for TMJ is Dr. Stephen Offenburger, San Antonio Texas. He deals with all types of pain issues. The doctor who made the splint is Dr. Risto Herme, also in San Antonio, Texas.
It literally took years of pain, to finally get some relief. It was a combination of TMJ & Nico.
The facial pain is indescribable to someone who has never had it. Nerve medication hardly helped at all.
Hope you find some relief.
Mary, how is your pain now? I am in the process of sending my info to Dr. Nunnally.
I have been pain free for 8 years. Recently some nerve pain has returned. It is nothing Compton what it was. I was not aware that cavitations can return. Might be be having surgery again. Hope you find relief!
I actually cried reading this article, this could of been written about me!
I have been in pain and on antibiotics since March 2012, I too have been dismissed and ridiculed as it “all being in my head” by many oral surgeons.
Thankfully I am now in the care of a wonderful dentist, who’s aim in life seems to currently be to make me well again.
I been same since 2011 lost all teeth now after nrgligent root canal other health issues spoents though pound trying too help, lost friends family don’t understand that cant talk some days or eat the dentist was polish they send her back too cover up her errors i lost everything
I have been suffering horrific atypical facial pain for 2 years now.
Let me first explain my symptoms.
Woke one night with tooth ache in either a tooth that had a filling replaced from amalgam to white for cosmetic reasons a month before or a crown which had no nerve, the pain quickly spread to all top teeth on the right upper side.
Pain killers taken-2 co codamol 30/500, after an hour 2 x 200 Ibuprofen as it was breaking through, had 3 hours relief.
Pain progressed in 5 hours to severe pain deep in my cheekbone (this and the temple pain were the worst) temple pain and severe pressure, tingling in my top lip and cheekbone, tooth pain- all localised to the RH side of my face.
Emergency dental exam showed nothing on xray and as i was in a very embarassing distressed state in the chair she said i should see a GP straight away.
Saw GP, came out with 2 possible reasons for this, shingles or TN.
My pain was CONSTANT and not flashing.
Perscribed Naproxen, more co/co 30/500 and aciclovir which were only to be taken should a rash appear on my face.
Had no rash, pain relief provided 1-2 hours relief but tingling remained.
During the night i deteriorated greatly, thought my temple and cheek were going to explode, i thought i had a tumour to be honest and had to see emergency doc, got tramadol to add to what i was taking.
Went to hospital the next night, had a CT which revealed nothing and was given Cabermazepine and the following morning unable to accept this was not stemming from a dental problem i begged my dentist who reluctantly gave me an antibiotic.
After a week the pain started to ease up and i carried on cabermazepine for 3 months.
Referred to MAX FAX consultant but before my appointment the pain returned as before for another 2 week spell of hell, took an antibiotic which i had and started cabermazepine again, all good after 2 weeks.
I was CONVINCED i had an infection in my face bone if it was not dental which was why i would have killed for an antibiotic to combine with my cabermazepine, it worked the last time.
Saw max fax about 4 month later when all was well, Saw neuroligist, had an MRI to see if the blood vessle was compressed, it was not.
MAX FAX consultant noticed a tiny bit of infection above the tooth that had the filling replaced, tested it and confirmed it was dead, had root canal which was not completed until 8 months after this.
Pain in root canaled tooth or the crowned one beside it (could never tell which was the offender) returned, hot or cold would set it off but mainly hot towards the end and i had to take pain killers every day, max dose for 6 months, no one dental could see anything wrong EXCEPT an overextension of the root fillings. Went to another dental practice as i was on the verge of systematically pulling teeth out and begged a very strong dental antibiotic, Metronidazole, no effect.
Paid to see a top ENDO once the pain again spread as before and was getting out of control.
THIS TIME my jaw, right at its hindge felt like what i can only describe as a broken bone, it was hideous, agonising and totally incapacitating.
The ENDO clearly felt the jaw was in a very powerful spasm and could not conclude that TMJ was the cause or a symptom of the severe pain i was in. I believe it was a symptom of the pain as it was so horrific i think my face was frozen and spasming with the pain.He also found my very back tooth on the RH side was VERY sensitive but looked great on examination and xray and gave me high fluoride toothpaste, this sensitive tooth is next to the root canalled tooth and next to that is my crowned dead tooth, these 2 felt like the offenders all the time.
I got amytriptaline and a mouth guard, i suffer bruxism day and night when stressed anyhow.
Amytriptaline, 4 doses of 30/500 co codamol and 3x 600mg ibruprofen seemed to keep it somewhat at bay although an hour before i could take another dose of anything the pain would break through and if i could not suffer till the next dose i used tramadol to tide me over.
Doc was concerned about my level of pain relief but could clearly see i needed it to survive, it was that bad, i would have chosen liver damage over the pain while i waited for someone to help me.
Doc referred me to MAX FAX again, dentist referred me to oral surgeon at the Royal school of dentistry. MAX FAX at his first appointment could see the back sensitive tooth looked different from the year befores xray, it was glowing brighter but no dark areas or obvious signs of peridontal disease, necrosis etc, nothing to hang their hats on yet.
THIS BIT IS IMPORTANT………..2 days before i saw the MAX FAX consultant i had a urine infection, a bad one and was put on antibiotics, strong ones……..STAY WITH ME HERE!!!!!
MAX FAX perscribed me gabepentin, said i must cold turkey off all pain killers as my body thinks it now needs this level of analgesics to cope with any pain and would give Gabepentin a chance to work. Advised i might suffer rebound headaches stopping these…..let me tell you i was so glad to stop all these painkillers i suffered NOTHING!!!!
Started Gabepentin the day before Xmas eve……..3 days into the antibiotic also and within 24 hours it worked!!!!
BUT, i had 3 courses of antibiotics in the end in a row and i will never know which took my pain away, there is a bit of bone loss around the root canaled tooth but dentist abd endo said that was because of the infection and how it either stayed the same or reduced would indicate in a years time if the root canal had indeed been successful.
The Oral surgeon at the Royal also wanted to combine gapepentin and amitryptaline and by my second appiontment with him he was delighted i had begun on this course and it seemed to be working apart from the odd stab and flash which was NOTHING compared to my previous hell and i refuse to take a painkiller while this remains the case.
Last visit to Oral surgeon at the school of dentistry finally showed something, the rear tooth which was sensitive was finally displaying another change, tiny and early but a dark lining around the root or nerve i think indicating that, while in his opinion its a very early stage the tooth will eventually need root canalled, im getting it extracted but its my body, my mouth and he implores that this problem could never cause such severe pain, he says nothing dental could cause that level of pain and be so unresponsive to the pain relief i was taking.
Things are changing, i feel something i have not felt in a while, the face pain and jaw pain are controlled with just gabepentin apart from the odd flash and stab but that root canalled tooth or the crown (which i had replaced 3 weeks ago-it was very old and yellow and i sneakily thought my dentist could see if there was a fracture in the remaining part of the tooth while he was there, he couldn’t see anything.
I have always thought this last attack could only be a fracture in the root canalled tooth, the crowned one or an infection in my actual cheekbone, at its worst it felt like my face on the right hand side had been whacked with a hammer on the cheekbone several times as well as all the above.
So, rear tooth is being extracted soon, i cant go through or afford an Endo to root canal it as my dentist cant due to the curved canals.
I guess a fracture can MAYBE be ruled out, Could my amitryptaline to stop grinding and my mouth guard be relieving the pressure my grinding put on it and it still be fractured at the root but its not being put under pressure and would in time there be other signs of a vertical fracture that cant be seen on an XRAY?
Could there have been an infection way above the root tips that an XRAY could not see?
Would it give you pain that even morphine would not respond to?
Did the 3 courses of antibiotics in a row cause the pain to cease or the Gabepentin?
IS THE OVER EXTENDED FILLING TOUCHING A NERVE?? A sinus??
Can a tooth in its earliest stages of changing (the back one which otherwise looked great) cause me this horrific agony??
CAN ANY DENTAL PROBLEM GIVE YOU PAIN THIS BAD THAT IT SETS YOUR JAW AND FACE INTO A MASSIVE SPASM AND CRAMP.
I am scared if the antibiotic did play a part in the pain relieving i could end up again in this debilitating pain and no one will ever know whats wrong except that many courses of antibiotics will work for a while for me, i was off work for months.
CAN A SENSITIVE TOOTH WHICH IS NOW AT THE START OF ITS JOURNEY TO DYING CAUSE PAIN IN THE TRIGEMINAL NERVE AND JAW?
Nobody thinks dental pain can do this to a human but im convinced that some mild dental problem triggers my atypical TN.
If after removing this back tooth the pain returns i feel i face a life of dentures, I’m only 35 but the next actions will be on return of the agony to extract the root canalled tooth and the remaining tooth left of the crown, cue THOUSANDS spent on implants.The root canalled tooth or crown are niggling again and im terrified these are my only options.
Maybe i will beg the ENDO to re root canal the tooth before i extract it, i just cant accept that something so painful could hide on an XRAY and i may need to take such drastic measures to get to the bottom of it myself, its either that or be locked up and i wont allow that!!!!
If anyone has any ideas, thought i appreciate them, i would come and see Dr Andrew lane in a heartbeat, across the water, if i thought he could see more than what others can, i would allow my jaw drilled into………ANYTHING to not suffer anymore, the pain terrifies me, i fear it coming back and whatever is doing it to me will continue to hide while i take drastic measures to find the cause.
Natasha, you have all my sympathy for what you have been through. Unfortunately this is much more common problem than many people recognise, where in the world are you? It’s best to find someone local to you as I have found that treatment is rarely a one-off thing; I’m just treating one lady with a very similar history that has had 60 visits and still needs the otolaryngologist to clear an infection that is lying between the jaw bone and the maxillary sinus lining. She’s back at work, able to socialise for the first time in 4 years and has much more energy but the pain returns every few weeks and two areas need draining. It can be a very long road to recovery I’m afraid.
Wow, I did not expect a reply from the man himself!! I live near Belfast.
It’s horrific and has as Amanda described I have been living in a bubble of pain and fear that no one will ever see what it is or I get locked up.
The tooth I had the white filling done in a month before the first episode did abscess during a ridiculously drawn out root canal treatment, my dentist usually was so snowed under that I often had 5-6 weeks between each cleaning of the root procedure, half way through, not surprisingly it abscessed and to me it seemed inevitable with the constant opening of the dressing and the opportunity the dead tissue left between sessions had to breed and do further damage.
I think there is undoubted nerve damage. I accept I have a dying tooth far from the ones that feel the very localised pain but the assurance that nothing dental could be so unresponsive to the pain meds I was on have left me fearful because I’m convinced there is something dental, it’s deep in my cheekbone as well as teeth, jaw, temple.
I reckon I could push for another MRI if I don’t lose my fight and perhaps what you have seen may show up?
Having said that it does not really apply to the 2 previous attacks which were a year before the tooth which had a filling replaced had an abscess.
Doing what I can, see the dental school again and seeing a top man there but he is no listener for sure, has all his students in which is fine but is more interested in relating with them than me.
I have put myself in a bit of a quandary in begging or acquiring antibiotics each time this has happened so not sure if the cabermazepine or antibiotics knocked my symptoms back the first 2 episodes. The cabermazepine had no effect on its own with my pain killers this time so we abandoned them and after a few months I needed lots of anti biotics and started gabepentin around the same time. So, I don’t know which has given me the true relief but I know this, it’s going to come back, I feel it stirring again.
I’m scared MAX FAX and school of dentistry are going to discharge me thinking it’s all sorted and I go through the whole referral process again which is 12 weeks if I’m lucky.
My cheek is starting tightening again, like I have just been punched.
I will keep you updated of course but if I could beg an answer at your leisure do you think an antibiotic would have a temporary effect on the condition you describe and would it show on an MRI? This could arm me with vital suggestions to the above consultants to consider and maybe save me from what has been a very grim few years.
Thanks again for a reply and taking the time to do so!! Over the moon you responded yourself!!
Natasha
Did I ever deal with this Natasha? Thought I had but just checking through old messages and found this. Not always sure WordPress works like it should, but probably me! Did you get sorted?
Cheers, Andy
Hi just been reading the posts I have suffered beyond for nearly 7 years had basic help but I’m becoming worse the doctors just dont listen and put the puzzle together my story is too long too put on here, however you name it all has happened it would be good too have communications and help plzxzzzzz Angela
Hi I need help been going through AME for seven years life ruined now they trying g too say I’m depressed its all a cover I believe after root canals o e min they agree the next they dont I know there’s somthing wrong but nobody owns up they ten top look at me all scans but keeping their minds its affect my sinus jaw tali g hearing and genetal health I’m worn out after 7 years now I feel my bone and gin need too be cleand out but think left too late ilive meds and antibioyics the sinus is all coected and the bone ear etc need a 3rd opinion regards as bn told im hysyerical and im not i
Me again!! Just had my rear right upper molar removed yesterday!! There was very early stages of some widening of the peridontal ligament, no signs of decay etc so rather than spend loads getting root canal as that would be inevitable I decided to get rid of it. The change was so slight and not visable in the many X-rays taken by maxillo facial doc the month before, but it was always sensitive on testing.
I had the surgeon do a tap test, first one where I was not doped up with painkillers and that felt awful, probably would have during all my appointments before if I had not so many different painkillers in me so he was feeling confident that it was cracked tooth syndrome hence the peridontal changes but would not agree that this was the source of my severe pain, it added to it but would have responded to pain killers.
One tooth down, how many more to go??
Fact, the antibiotics stave of the severe pain for a week or so. I experimented when I felt the pain creep back last week and it worked but it’s trying to break through again and my jaw is starting to spasm again.
No one seems to seem interested that the antibiotics have helped when every pain killer known to man had to be taken in dangerous doses just to give me a few hours relief!!
And my upper teeth feel a bit distended on the offending side. And that’s where I’m at.
It feels the Antibiotic working for short periods has to be significant but it’s falling on deaf ears sadly, I was excited that it would point to the culprit. Gutted no one I see seems educated enough to place significance on this.
Will update more when I can!!
Fingers crossed for you Natasha, thanks for the update!
Hi I am 35 and I have very similar thing to you! I am about just made it , but just about … Still very much in pain 24/7 , have you got email address I could email it to you … As I really need someone with similar thing to talk to , as I been dissmissed that it was in my head … Finally I proved them it wasn’t , but it’s still no treatment for damaged nerves …I will go and see Andrew lane .my address Neringacaws@gmail.com please if you don’t mind I would love to talk to you .
Hi!!
My email address is natashakerrycollins@hotmail.com
You are welcome to send me an email anytime!!
My face is getting bad again, still not sure but the hospital noticed a shadow above a tooth that seems fine and has never bothered me.
I don’t like to tell them how to do their job but I wanted to ask about whether NICO would present like this on an X-ray.
You have my full sympathy. I can’t deal with this again after 2 good years. X
Hi – i have been having facial pain “atypical facial pain” for the past 8 years! everything i have tried has never worked, i have been on pregabalin, gabapentin, amitripline, nortripline and tramadol nothing has ever touched the pain and discomfort. i have been to see ETN and hade MIR scan both coming back normal The pain is mostly the corner of my eye and down the side of the nose, and sometimes feel pins and needles in my forehead, sometimes have pain on my scalp and neck and by the back of my ear.
I have a tooth extracted in Thailand a few months before this all started – not sure if that is anything to do with the pain.
I have now been referred to Max fax – hopefully they can work out why i have had this pain for so long. – I’m only 33 now can’t ever imagine life without this pain!
fingers crossed
James
James: ive read your story of horrific pain ur in along with so many others. You need to know that just because u get a tooth extracted doesn’t mean it was extracted properly. The problem is with some dentists and oral surgeons , is that when they extract a tooth,they sometimes don’t go that 1mm deeper to scrap the remaining ligament attached to the tooth to where the root of the infection is , & its left in your bone to keep spreading infection through the rest of the bone to other teeth roots st the apex of each tooth. It’s called cavitating the extracted tooth sight. You need a experiened oral surgeon who knows how to do this properly…
Hi I have been sufferinh same for 7 years many scans MRI and meds have no teeth on left side have dentures butey bring the tmjd and tn on worset face goes hot roof of mouth ear jaw and sinus pain which raiaites too bone of nose pribs eating taking had vast a.punt of antibiotics over the year as these calm all down I have numbness and the pain is in the joints as if a knife is stabbing me a d bad spasams all has made my life hell told have tmjd and tn however I feel that the cranal nerve is damaged and have infection never been detected at the times of scans only sinus also pins needles and shock pains when I eat or talk also back of head just a few of my hell I need help my life has become not good all consulatants have tried but condition becoming g worse thanks any advice plzzzzzz
Am amazing story to read, good to read a success story that has been treated without medications. I am suffering severe neuro pain post orthodontic work and has been going on for months and am waiting for an appointment, your story is telling me there maybe no treatment options available to me being medication sensitive. Well done Andy on getting to the root of the problem! And saving this ladies quality of life.
I’m so sorry for those of you suffering from such pain and so extremely grateful for people such as yourselves Andrew, for helping in what seems a helpless situation.
I’m 29 and was diagnosed with Trigeminal Neuralgia two years ago. I’ve only just started to get my life back this year. In Jan 2012 when the pain started I tried every medication given – pretty much most of what has been mentioned already. Until the neurologist started me on carbamazepine which I’ve been on now for almost two years.
I also know what it’s like to have people believe the pain I was feeling was in my mind. They thought it was psychological and told me so. That was devastating. It’s taken me two years to put weight back on and actually fall into the ‘normal’ range on the bmi scale again.
I was wondering if whitening teeth by taking moulds and using a bleach solution will effect the TN? I have no one to ask. I know more about TN than the several GPs I have seen and have been discharged by the neurologist I saw.
With the carbamazepine I feel pain occasionally but nothing I cannot handle compared with what I’ve experienced. Fortunately I haven’t had any pain whatsoever in about a month. I don’t want that to end!
I hope you can help Andrew.
Thank you.
Dear Amrita,
Thank you for sharing your story and congratulations on managing to get free of pain for so long.
Regarding your question about tooth whitening – on the one hand I can’t see a reason why this might make a difference, although I would stick with 10% carbamide peroxide in custom made trays, but another part of me wants to urge caution. In the end it has to be your decision based on a) how much better tooth whitening will make you feel weighed against b) how scared you are of your TN returning. There’s nothing to prevent you using whitening with caution, maybe for an hour or two during the day, to see what happens before going through a full night (which is what you really need to do if the 10% gel is to be effective). I hope this helps 🙂
Best regards, Andy
In 1984, I had 4 children under the age of 7 and started having severe jaw pain. The ENT said I had TMJ. I wore the appliance 3 years & then braces for 3 years. The orthodontist then said it was fixed.
Around 2000, I started having severe facial pain on the side where I had TMJ. Severe stabbing, electrical pain. On top of that, one sinus infection after another on that side. I felt like I had the flu. I went to a neuroligist, did the MRI and found nothing. Was put on Neurontin & many other nerve pain meds. They barely touched the pain, and had
bad side effects. Then was sent to an oncologist, as the blood tests showed issues with my bone marrow. 7 VERY LONG YEARS of sleepless nights, pain and hopelessness as no one could actually say what the problem was. By 2008, I was at the end of my rope. Went to my dentist and begged for a root canal. There was only a small cavity, but I insisted. He did the root canal & said the tooth was dry rotted. Then the tooth next to it started hurting, again either insisting on a root canal or just pulling all my teeth, he did another root canal. He said it was very unusual, as that tooth also was dry rotted. The teeth looked fine from the top, but evidently there was no blood flow to the jaw.
At this time the pain became unbearable day and night!!! I went to a conventional doctor who also incorporated alternative medicine. When I told him I was at my wits end in pain, he said “I know what you have, because I have it myself.”He said no other person could possibly understand. He said I had NICO, and needed to have the cavitations cleaned out. It all showed up on an ultrasound. I was sent to Dr. Nunnally in Marble Falls, Texas.
I then went to Dr. Nunnally in Marble Falls, Texas who basically saved my life. He had to extract about 20 back teeth and clean out the jaw cavitations. When waking up from the surgery, the pain was less than I had felt for 8 years. I didn’t even take any pain meds from the surgery, it was just a little sore. The blood flow to the jaw had been cut off, and the teeth had become dry rotted and there were cavitations.
At that point, I finally had my life and health back. I didn’t hurt & was not sick at all. For the following 6 years I still had neck and shoulder pain on the right side, some sinus infections, but not the stabbing facial pain.
In early 2014 I started getting sick again. Long story short, my son who is a chiropractor, Stephen Offenburger in San Antonio, suggested the pain was from the TMJ I had many years earlier. I went to a TMJ specialist there in San Antonio, Dr. Risto Herme. Within one day of being fitted with an appliance, most of the right hand side pain began easing up. I started having blood flow down my right arm to the ring & little finger. The right side of my face and body stopped having spasms.
I really don’t know the entire connection of NICO & TMJ, but will say if untreated can literally wreck havoc on your quality of life. I have to now wear dentures, since I don’t have most of my back teeth & an appliance. That is fine………..as long as I am not in pain!!!!!!!!!
Many thanks to :
Dr. Nunnally in Marble Falls
Dr. Risto Herme in San Antonio &
Dr. Stephen Offenburger in San Antonio.
I hope this story helps others who are suffering with facial pain.
I forgot to add that, during all this – antibiotics did help the right sinus infection for about 4
days. I have been on so many during this long period of time, that I cannot even count
them. Once all teeth were pulled, Nico cleaned out and TMJ appliance worn, most of
the pain is gone. That includes everything down the right side of my body. The jaw, the right sinus and the rest of the spasms.
Nico and TMJ can totally ruin your life, if you don’t get them taken care of.
Only someone who has gone through this will understand.
I have had sharp rt ear pain for over a year, the last week I have had severe jaw and cheek bone pain after a blow to the lefr side of my face which made that side instantly numb since then the ja w amd cheek pain has put me in tears and i have NO ENERGY AT AL, HAVENT FOR FOR AWHILE. Ihave a neck injury among other things going on in my neck area, all from a head on collision 9/10 years ago.. I also can tell a bit of a difference in vision. ( I’ve been told I hv cervical bilateral ridiculopathy, spinal stenosis, scoliosis jusy in the cervical area of my neck.. I suffer from chronic pain daily. . I take neurotin daily for the nerve damage which is starting to not work. . The facial pain is the most HORRIFIC and I just can’t function. I also rotate aleve/ibuprofen plus ice/heat on my face but its a short term fix.. I need a doctor in indpls in that can help PLEASE PLEASE PLEASE PLEASE PLEASE PLEASE.. I CANT WORK DUE TO ALL THE DAILY EXTREME PAIN AND I AM SOON TO BE in foreclosure on my home. I just want and pray to be some what normal again.
Angela, this sounds terrible. Where are you located?
Regards, Andy
I am writing thus after spending the entire night in waves of excruciating pain. It started a fww months aho with sensitivity in top left molar, no. 19 i believe. My dentist said all looked fine and recommended sensodyne. A month ago, i awoke with a cluster headache and excruciating pain in the top left molars. Then after a few weeks it happened twice in the space of 8 hours… Excruciating spasm of pain the left side for about 5 minutes. Having come across trigeminal neuralgia in internet searches of my symptoms, i saw a neurologist who said I probably did have that. I stsrted oxcarbazepine, 150 mg twice a day and b complex. Also was give naproxen, which is completely ineffectual.
Since then, the spasms appeared to refuce in intensity. But in the last 10 days, eithin 30 minutes of going to bed, whether at night or for a nap, i awake in pain. Sometimes in teeth, sometimes boring feeling in temple thst rafiates to teeth. Last night, even before i could lie down, I started getting the pain, mych eorse than begore. It would eb slightly after 10 minutes and then start up again, sometimes within minutes, sometimes about an hour. I have spent the whole night like this.. Dozing off and being awakened by the pain.
Last week I saw an oral surgeon who said my last top left molar looked iffy and recommends extraction. I am nervous about extraction and an implant irritating the nerve. An mri if the brain came out normal. I have a copy of my 3d dental x ray. May i send it to you. I am in the US.
Sorry for the delay in replying, the advice of the oral surgeon sounds good. Go with it and let us know how you get on. Andy
Gosh this sounds so identical to how mine started.
I had a tooth extracted, turned out it was fractured and my pain had left. Until now, it’s coming back for sure and I’m dreading it.
You can read about it on older posts here.
Let me know what your outcome is. It may help me piece this excruciating puzzle together.
Waw how much pain in this world, I have 24/7pain in my head jaws ears eyes muscles actually in my whole body, I was healthy until age 53, Im currently 58, my disgrace started after a dentist put crowns in y whole mouth and change completely my bite, the pain is so severe that I lost all my hope, seams like my teeth are pushing against each other and comprising all my skull bones, my mouth and teeth used to be small, now are big and pushes all my bones of my skull side ways,it did affect all my health please I need help, Any suggestions?
Hi, thanks for sharing your problem. This is fairly common, you need to go back and tell your dentist about this. If he/she doesn’t know what to do you will need an appropriate referral to someone experienced in this field.
I HAD A ROOT FILLED TOOTH EXTRACTED EVEN THOUGH MY DENTIST COULD FIND NOTHING ON THE X-RAY. THEN DEVELOPED DRY POCKET. ON ANTI BIOTOC NOW ( 3RD LOT) SUFFERING FACIAL PAIN & RINGING IN MY LEFT EAR. WOOD BE GRATEFUL FOR A SOLUTION.
It sounds like you will need the area cleaning out thoroughly – please go back and let your dentist know what is happening. If he/she doesn’t know what to do then you should insist on a referral to someone who does!
Hi i am attending my first apt with maxiofacial tom.pain and cramping of face and jaw for 6weeks now
Around 3 months ago I suffered from a bad ear infection. About 3 days into treating my ear infection with a z-pac antibiotic, I starting feeling shooting pains in my upper and lower jaw. When I returned to the doctor I was told the antibiotic did not work and was put on amoxicillan. I still suffered from pain in my upper and lower jaw, as well as throbbing and stabbing pain inside my ear and in the area right outside my ear. I also started to develop headaches on the left side of my head (same side as the ear and jaw pain). When I returned to the doctor, they saw thaty infection was cleared up, but that my ear canal was inflammed. He thought it might be an external ear infection and prescription a 3rd antibiotic and ear drops. While I was on that course of med, I saw my dentist who examined a recently crowned toothe (about 3-4 months new) and sent me to the endo to look at a root canal. Scans were somewhat questionable but when the doctor got into my tooth, it was very angry (his words). There was a ton of pressure built up and he said it was on the verge of being infected. I believe all those antibiotics prevented it from abscessing. Recovery from the root canal went well. The shooting jaw pain soon dissapated and what remained was this horrible inner ear and outer ear pain right where my tmj joint is. I also still had the throbbing headaches (left sided). My regular dentist tested me for tmj and he felt it was more tmd–dealing with the muscle. I was prescribed muscle relaxant, which helped some. I was also prescribed gabapentin at night ,which I stopped taking as it didn’t work as well as the muscle relaxer. I am getting hard splint made. Some of the doctors have thrown around cluster headaches or trigeminal neuralgia as possible diagnoses. The neurologis I saw insinuated it was all psychosomatic. I am at my wits end. I don’t believe I ever had any jaw joint pain prior to this ear infection. Could it be possible that the ear infection traveled to the jaw joint and the doctors are missing it? A CT scan and MRI (with contrast) of my head aND face showed nothing. I am hoping the splint works, but I’m also afraid that there is an infection lingering that no one is picking up on. I have an EAR Nose and throat doctor appt in 2 weeks and I’m hoping that will provide more answers. Any suggestions? I am a working mother of 2 and just want my normal life back without constant pain and doctor appointments.
Hi, did you have any clicking or popping noises in your jaw joint, or difficulty opening your mouth wide? Hard splint is a good starting point, best to see what that does and if ENT find anything. Hard to say without examining you of course, but it sounds like you have good people looking after you. With warm regards, Andy
Hi Andy,
I did get some clicking and poppjng but it didn’t hurt when it was happening. I occassionally feel my jaw clicking when I eat, but indont know if i am hearong it kore nownsince im eating on one side of my moith to avoid the root canal tooth as it heals. My neurology appointment was a disaster as it was suggested that my symptoms did not make sense and that they were psychosomatic. I won’t be returning to that neurologist. I am looking forward to my ENT appointment. I was prescribed a muscle relaxant to take at night and this has been very helpful in decreasing my pain throughout the day. As a result, I don’t have to be on a constant cycle of ibuprofen and Tylenol, which is harsh on my stomach. I may have to take a dose of ibuprofen in the evening, which might suggest that it is TMJ and that my muscles are relaxing and possibly taking time to decrease inflammation (at least that was suggested to me by a nurse). I hope to see more improvement once I get my hard splint.
Hi Andy, Happy to see your website. My issues began with an overfilled root canal in my front top tooth and the injection went into my sinus under my nose. (If that’s possible.) The pain on that side was almost unbearable, no it was unbearable. even with meds. I waited days to see if the pellet and overfilled substance would dissolve, and was told it did. I kept complaining of pain, and my dentist said he went into the bone, and it would take time to heal, and he overfilled purposely and that would hurt too. Finally after I could not continue the pain, I went to an endodontist who gave antibiotics which cleared the pain within a day, and lasted for a few weeks. Now what is happening is I have random streaks of pain in both ears, (ent’s ct’s show i am fine there). and also a weird cottony feeling, like swelling, or numbness, or a pulling in my cheek, in front of my earlobes. (trying to describe). After a week or more of this, the same feeling is extending from in front of the ear and straight upwards at times. What do you think? I wonder if this could this be nerve damage from the tooth, and should I see a neuro, or a dental surgeon.. I could really use some help and direction if possible. Thank you !! 🙂
Hi Julie, you really need to go back to the Endodontist with this and see if there might be something surgical he can do to clear the infection before it gets too well established. If you’re not getting anywhere please email me andylanebds at gmail dot com
Cheers, Andy
I am a 40 year old mom of 4. I was diagnosed with atypical TN a year and a half ago. I bit into a popcorn kernel and had fire up the side of my face for that night. In the morning, I had a low ache in my back tooth. Xray shows nothing so they gave me the diagnosis of TN and put me on carbamazepine. Now, my tooth is constantly aching and has a sharp pain when I bite and I wonder if I have Cracked Tooth Syndrome. I have no trigger spots for TN and the pain is almost always low and dull. It gets worse with the vibrations of driving. Only three times has it been sharp. My dentist is open to thinking it may be a cracked tooth that he can’t see – but I don’t know what I should do. Do I pull the tooth or have a Root Canal? If I have TN, will pulling the tooth make it worse? Would a root canal make it worse? I don’t know if its a cracked tooth, TN, or both. I wish there was someone to give me guidance. Any ideas?
Hi Lucy, this definitely sounds like cracked tooth syndrome to me. A root filling is the place to start. You need to find a specialist Endodontist with a microscope. They’re the best people to diagnose a crack and determine whether it can be saved. Good luck!
Cheers, Andy
Wow. Thank you for responding! When you get the diagnosis of perpetual mysterious tooth pain it’s easy to feel so alone. Once you have TN on your paperwork, no one wants to seek out any other options, you know. Thank you for your advice – I will be seeking out a cone beam scan and go from there. I will also begin looking for an Endodontist who will listen to me. If I have any other questions I may post again if that’s ok. Thank you Andy!
Of course Lucy, but you shouldn’t need a CBCT as a preliminary test, a dentist with a device called a “tooth sleuth” will give you an answer about whether you have a cracked tooth pretty quickly, and a lot more cheaply!
Hi Andy. My oral surgeon did a cone beam scan and found nothing. Then he pulled out a tooth sleuth at our request and my sore spot sent me through the roof! He said I definitely had a cracked tooth. I had the tooth extracted last Thursday and while the swelling has gone down and the gums are looking better every day, I have the same constant ache in my jaw right under where the tooth came out – only worse now. When I sleep the ache goes away and I feel great. But as I get up and talk and move around the deep ache is back. Is it at all normal to have nerve pain like this after an extraction? Could my nerves just be irritated from the year and a half of cracked tooth and now extraction and need time to calm back down – or could it be atypical trigeminal neuralgia? I’m so discouraged. When I first wake up I feel so normal (except the swelling discomfort) and then within the hour I hurt so bad. The hydrocodone they give me doesn’t seem to touch it, nor the Advil or Tylenol. I’m still taking carbamazepine for TN, but it doesn’t seem to help either. I had one day where the pain just stopped for about two hours and then to my despair started up again. I want a future where I can kiss my children and enjoy them. Is there any hope for me? Any thoughts?
Hi Lucy, well done for finding the cracked tooth at least! It’s a bit too early to tell, but I suspect you have some remaining infection in the jaw. It’s been there a long time, so it’s not surprising. You should definitely return to your dentist and ask him to check there isn’t any locked in infection. It’s probably not atypical facial pain or trigeminal neuralgia, which would respond to the medication better, so don’t give up with trying to find a solution!
Thank you! I have an appointment on Thursday and I’ll be sure to ask him about infection. Would a round of antibiotics be a sound next move in your opinion, just in case? Thank you for the encouragement! I can’t believe the kindness from an online stranger – God bless you.
If it is a well established bone infection it would take a long course of antibiotics (months possibly). Maybe your dentist could get a swab sent to a path lab to find out which antibiotic would be best. No substitute for physically removing the infected tissue though.
Dear dr Lane , My problem started when I had ll6 retreated , 2013 , everything went wrong from block injection , as my jaw joint was on fire and I couldn’t open my mouth , so dentis used rubber block in order to open my mouth … Straight after procedure my check started to feel like attaching and shooting pain , my face started to flush , my jaw joint was burning , my vision started to baker blurry, I went to gp , go said it was Tn , I went back to dentist dentist sugested ll5 retreatment , after that my scalp stArted to Burn , my half face started to feel like stretching , twitches , Amy body was on fire , dentis did X-rays my both teeth were overfilled , he took ll5 out , by that time I lost trust in that dentist , had referal to max fac, I was made up as all in my head , my face still flushed with redness , I started to ask my dentist maybe I am reacting to eugenol as I am still tasting it in my mouth … No answers there … By that time I started to have weekends in my body my muscles started to twitch ! Wasn’t able to focus , my heart rate 140 … I am throwing up everyday ! I am out of this world ! I can’t function as my face feels like been streched , feels like someone is slising my jaw with a knife .by this point I am on my knees begging my gp to give me steroids as I think that I am having periferal neurophathy eather from neurotoxins that I am allergic to from ll6 as it still there , no one listens to me any more ! Only what I am manage is to crawl to my gp and beg to hospitalise to neuro depRt , but I been offered and mad house instead ! I have 2 little kids one 6 months. And 6 years ! My left side contracting in one line starting through my scalp running down corner my left eye , my front left tooth , stopping at my neck .. 7 months later I am going to Lithuania to take ll6 out , as I am pretty sure is making me ill , also on xray ll6 root is dissolving !! By that time I already know I had massive trigeminal nerve damage left side , my skin around my nose is Thining , as my whole face skin has changed , I am saying to my gp I think I had small foible neurophathy to my whole body , as my feet burn and my hands … Nobody believes me !! I am asking for lumbar puncture to make sure I have no inflomation as my brain is on fire and I can’t get up because I am so week and can’t function from pain …. After tooth came out 2 months later my hear rate , I normal and I stopped throwing up ! But my brain still on fire and my vision is bad I can’t focus … No doctors believing me !!!! Finally 1.5 later I saw neurologist kings collage London .. He did all test , skin biopsy , nerve conduction , MRI , microneurography , lumbar puncture , I failed lumbar , as anasthetic made me callapse , they didn’t repeat with general a. Results I have small fibre neurophathy whole body , from unknown ! My facial nerve damage is something I can’t live with , my jaw is burning , my left side is deforming , from nerve damage , loosing fat tissue around my left eye where my contractions are … I had steroid treatment 500mg for 5 days .. Only thing got better is my feet pain and lower leg pain… I am pretty sure that something is going on with my left side lower jaw , where apses was and where my ll5 and ll6 was overfilled … Now that I have proven all my previous doctors that they were all wrong I need to look in to my jaw bone , and what’s going to happen with my left side as my left eye also is sinking in , I live near Bristol , in malmesbury , I really need to see dr a. Lane , as I read a story about lady who dr a. Lane treated I will contact his clinic to get an appointment .many thanks
Hi Neringa, you should try to see Charles Lister in Salisbury first, he’s much closer to you! Good luck, sounds like an absolute nightmare 😦 With warm regards, Andy
Thank you so much for replay , unfortunately I have seen many of dr including 3 max fac , one in Salisbury too . Mr flood , that’s before my diagnosis from neurologist , everyone just brushed me off as anxiety , and no one believed me that from 1 root canal , I could be sistemicly ill , now that I have proven to doctors I wasn’t insane , I need someone to properly look at my lover jaw and jaw joint , also i need someone who could look at my face left side , I do know that trigeminal nerve damage causes pain ,but the constant contractions on left side is making my face deformed , and no it’s not in my head , these who are close to me they see the differents , so I think I need to start from a scratch and see you please, then maybe I will need to see max fac for my face deformation , but without a fresh start from experienced dentist like you dr Lane , I have no chance to get somewhere , even to see dr . Hadden in kings collage I had to find my own way , as nobody gave me referrals , because everyone said it’s just in my head .so please let me see you , if you dont mind ? Many thanks
AVOID ROOT CANALS! Had mine removed & systemic rash disappeared!!! I will no longer get them! If u have any I suggest u remove them & watch your health improve!
Reading all of this is educational, but gosh, so much to soak in. I had a very sore tooth (root canal/crown done 5 years ago), and it got progressively worse. Went to my dentist, he didn’t see anything on the xray. It got so bad I went to a oral surgeon and had it removed. The pain did subside, but have had nothing but problems on that side of my face for a year now. I do have sinus problems, but now it feels like my ear on that side is always full, have ringing in ears, and shooting/pressure headaches on that side. And have noticed I am clenching my teeth, even “chattering” them when I am busy with a project and have to make myself stop. Also have strange semi-panick attacks (which I have a history of for many many years). The crown was the second on the same tooth, and frankly, it never felt “right”. I am wondering if all along my bite caused the problem with the crown and gum area. It wasn’t infected per my dentist, but it was sore as hell all the time. He thinks it was chipped. Does this lean towards TMJ? Again, I have caught myself clenching my jaw all the time now! Thank you to everyone for sharing your stories, I am at times miserable with the aches this is causing. ALSO, I have gone to 2 ENT’s, found nothing except bad sinutitis
Hi,
Oh gosh, I wish someone could sort my pain out. It’s been over 8 years now and I’ve honestly had enough 😓 How do I get in contact with Andy
andylanebds@gmail.com
I need help this sounds like me, please send me info on where to go and who to see. Just had another bout of shingles in my face. And don’t know where to turn. Deb Dutton
I live in Texas
Hi Deb, if you have shingles that is a viral infection which should be treated by your physician. There are some good anti-viral drugs out there these days that should be able to help.
With warm regards, Andy
Thanks I’m taking them, just feel there is something that is missing. Ive gone though a round of the meds and the pain is worst. Just trying to understand. I’ve suffered for four and a half years. Everything I try doesn’t seen to help. I just went though thousands of dollars paying for blood test then hundreds of supplements. I’ve seen all kinds of Poeple . I’ve been told that it’s not TN maybe it’s all shingles and there just bad I don’t know how to cope any more. I feel good I’m gluten free I have energy. Just want to know why this unbearable pain. Burning and stabbing in the right side is my face. Just praying for answers . Thanks Deb
Sent from my iPhone
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OK Deb, I understand. I don’t know anyone in your area that does the sort of treatment I do for jaw infections, but you should see if Dr Wes Shankland in Ohio can help at all. http://www.drshankland.com
Dr. Nunnally, Freeman& Owens. I am actually going there myself for work in June(MUCH work elsewhere
I have done over the years have left me in the situation I am in. He has a lot of information on his site. They are very well know and people come from miles and also out of the country to see him for diagnosis and work. I am so looking forward to it! They are located in Marble Falls TX. I am coming from Maine to see them.
I last commented on this site on Nov 28th 2013, I have been in pain since March 2012 and my pain continues. I have now also lost my UR 4, 5, 6 & 7. I am 43 years old and had previously never lost a tooth or had a filling, so I feel extremely sad and my case just seems to worsen. It is believed that I had a NICO lesion in the area of the UR4 and after some work, this area settled. The extraction of the 5, 6 and 7 left me with severe dry socket infections each time. The extraction of the UR6 was very painful and I felt like the bone in the surrounding area was going to snap. I was left with a huge gaping hole in my gum for many months, even now this area has quite a deep dip in it and has never really healed. I am continually sucking on this area to relieve the pressure in my cheek and sinus and the taste of the fluid coming out changes in relation to being on or off of antibiotics and if I have used nasal spray at all. I believe I have a significant OAF, I have been dismissed by two NHS hospitals as having TMJ, this diagnosis being reached after barely examining me and disregarding any X-Rays or private scans I provide. I am now once again on a 6 week course of Co-Amoxyiclav and Metronidazole in an attempt to maintain some sort of normality in my life, but his merely treats the symptoms and not the cause. I will of been subjected to this cycle of pain for 4 years come March and its close to mentally breaking a very mentally strong and resilient character. My husband is in the armed forces and once again I face moving home in 6 months and starting to seek treatment from scratch again, achieving nothing in the process. I am not imagining this, I can taste the draining, I can feel the dip in my gum. I am operating at 85% whilst on antibiotics and reach a point of not being able to function at all off of them. I am scared, I feel the infection is spreading and affecting the bone and nobody is taking any notice. I get pain above, below and behind my eye when infection is at its worst, with mild distortion to my vision. The bone in my cheek almost throbs and aches and the gum is painful to bite down on, as it was when the teeth were in place. I also get a swelling in my right cheek and above my eye. All of these symptoms subside when I take antibiotics. I just want the cause of the infection resolved, to loose the need for antibiotics and to regain my life once again. I am unable to even consider implants at the present time and bone loss in the area is significant. This is not facial pain, but I cant get anybody to listen to me, this has been going on long enough to know my symptoms well. Every dentist I see, considers there to be a problem, every oral surgeon I see, dismissed my case as facial pain. Kind regards, Julia
I finally received the crown for my front tooth implant last Friday but my face has been in constant pain since then. Throbbing, burning and sometimes shooting pains which seem to spread when I lie down. It’s been relentless for 4 days now and I’m due to have it removed this afternoon which I’m very sad about. I shall revert to a valplast denture until I can figure out what to do. The implant is a thing of beauty but not worth the pain. I fell on my face when I was 15 and the front tooth died. Following a few veneers and then a crown I ended up needing to have the tooth removed when it fractured below the gum line and became infected following my first bout of chemotherapy for breast cancer in early 2013. I had a Maryland bridge fitted during cancer treatment. After all my treatment had finished I embarked on a course of treatment to clean up my mouth. I had all my amalgam fillings removed and replaced with porcelain inlays; I had 4 cavitation surgeries where the periodontal ligaments left from previous extractions were removed and cleaned out with ozone. I think this is where I may have sustained some nerve damage or irritated the nerve in the front tooth. The dentist who carried out the cavitation surgeries made me a non-metal Maryland bridge to replace the very metallic previous one but I was in pain every time I ate with it and the pain took about 90 minutes to settle down each time I ate or drank something, despite using a waterpik and maintaining meticulous dental hygiene. I changed my eating and drinking habits to try and accommodate the bridge as it was a good cosmetic result for me. In the end I gave up and opted to have a flexible denture made which meant I could remove it to eat and drink and felt no pain whatsoever any time I ate/drank. In the meantime I was recommended to visit a dentist with a lot of experience in the field of implants. I decided to go ahead and was given an implant with a bone graft as there was very little bone left having not had a tooth there for over 2 years. Given my history with the tooth I was nervous but the implant procedure went very well and everything settled down over 3 months. I returned a few weeks ago whereupon a crown was made to attach to the abutment. Once the abutment was fitted and a temporary crown fixed to it (just something from a tube which hardened into a temporary tooth) I started getting discomfort and low level pain when I ate. I also got a few ‘zingers’, shooting electric shock type pains which I hoped would disappear once I got my final crown. Sadly, upon placement of the permanent crown I’ve been in constant pain, sometimes 8/10 which is difficult to put up with. I’ve taken tramadol and been applying numbing gels hoping it would calm down but I’ve had to concede that it probably won’t and I’m due to return to the dentist today to ask for the crown and abutment to be removed. What I’d prefer to do is address the nerve pain so that I can keep the tooth. It’s a thing of beauty. Instead I’m going to have another flexible denture made as we’re due to go away over Christmas and New Year and it will buy me some time to consider all my options. I would really appreciate your thoughts on my current predicament Andy.
Update: The dentist removed the crown and abutment this afternoon (leaving the actual implant in the gum) and my teeth just feel sensitive at the moment. The pain has gone away. I believe there is some interplay with my nervous system when the crown and abutment are placed on the implant but I just can’t figure out what to do to avoid irritating the nerve if I have the crown placed again. As I suspected, this dentist has not come across this particular issue before. He did concede, following x-rays, that it’s the nervous system that’s misfiring rather than an infection or decay. But what to do in the New Year??? Try a shorter abutment, a looser fit on the crown?. I’m not even sure that either of these is an option. I’m at a loss as to work out how to avoid this happening again. I’m having another flexible denture made tomorrow as I can’t walk around without a front tooth and this will at least buy me some time to fully research this issue and decide if it’s something worth pursuing.
Thank you for telling us about your experiences. It sounds like it must be almost as frustrating for the dentist as for you! I would think it unlikely this is being caused by infection now and suspect it must be an occlusal (bite) function issue. Good luck, and please keep us informed! Andy
In 2012 I had a root canal put into my mouth.
2013 A year later, with no tooth pain I started experiencing ear ache.
Earache and throat pain.
This came and went and I felt dreadful.. sick, shakes and panic attacks.
I started reseaching natural medicine and healing therapies and discovered IV Vit C. In this process someone asked if I had a root canal problem and to get my tooth out.
I went back to my dentist and insisted they remove the root canal filled tooth. The dentist did not want to, and took an xray. The tooth was fine, I said… “Take it out anyway”. He did and low and behold, not one, but two tiny abscesses under the tooth. I asked if this could have caused my ear pain and he said ‘[probably yes’ and gave me pain killers and antibiotics.
5 months later I was not much better. I also had a rattle in my lung and a wheeze with the swallowing problem and earache.
I found an alternative dentist who said I had an NICO lesion most likely. I had to go onto a healthy diet, supplements and Vit C. He said he would take the lesion out and I was lucky to have found him 5 months after the extraction. Of course it had been a year in my mouth though. The surgery went well. He said the edges were all well defined, and he felt he go all the dead bone and he scraped everything clean and sewed up my jaw.
for all of 2014 I did get better… a lot better. My jaw healed well. I went to a naturopath and over the next year. She had me give up Tea, Coffee, Sugar, Gluten, Dairy and take on a lot if supplements and I lost a huge amount of weight. I honestly thought I was much better… I was as I resumed a lot of my life again. At one point I went back to him with pain in my jaw and I was a bit panicky… and he reassued me that there was no inflammation in the bone and with a mirror showed I had a mouth ulcer that was causing the pain (phew) the laser that he ran over the jaw provided no pain feedback. When I first went to see him that same laser run over the jaw at the site of where the Nico lesion was radiated intense pain and how he found the inflammation. I know that the jaw has no inflammation now. Thank God we got the lesion out!!!!
I also went to the chiropractor and I had had a barium swallow and gateroscopy to try and understand my throat pain and lung wheeze. It seemed that some of this was acid reflux and the diet change and supplements and weight loss brought this to an end. i had been breathing stomach acid at night. Never a good thing. I am drug adverse and so avoided the antacid drugs in favour of losing weight and getting my stomach and gut healthy.,
All the while though… intermitent stabbing ear pain. The SAME ear pain I had right at the beginning. Late one night fear struck into my heart as I read somewhere that the Nico bacteria? inpact? can escape the original site and land in other areas of bone and had been know to get into the ear canal… Surely not though with my jaw healing well. Could these ear pains be Nico related would the jaw have ever healed? But deep in my heart I knew that that stabbing pain in the ear I was having was identical to the the pain at the time of the tooth problem. However they came and went and were a mild disruption.
The ear pains are like ear infections, they are not normal ear infections. I lived with them because I had been to an ENT surgeon who was sure there was nothing wrong with me that ‘breathing properly’ would not resolve. Eight months later the nightmare kicked up a notch. One morning the ear which had been pretty okay mostly suddenly went deaf and the pain started. At first I thought it was one of my weird ear infections and it would pass. It didnt. Back to the doctor.. he could see nothing wrong with my ear and suggested an audiologist. The audiologist confirmed I had lost almost all the hearing in my right ear. And that this deafness was permanant? He said that there had been an ‘interuption to the blood supply into the cochlear’ and when I asked what, he said he did not know and that I needed an MRI.
Suddenly the ENT was more interested, after I wrote him a scathing letter. I told him breathing and anxiety cannot cause hearing loss and he agreed. And I am now waiting for an MRI to rule out a small tumour that can grow on the auditory nerve. I am convinced it is not this. This is the SAME pain, only now it is constant and worse and I feel it in the back of my head, in behind my nasal cavity, deel in my ear and in the roof of the ear canal.
I cannot go back to a dentist as they cannot operate on my ear. I am not usre but I do not know if an MRI will even show inflammation or damage to the bone in my ear if it is in the marrow.
I think I need a comprehensive approach of heavy duty antibiotics, anti coagulants, Vit C and the bone scraped inside my ear and I have little hope anyone will do this or help me.
I am waiting for the MRI to show nothing… and be offered antidepressants or a diagnosis of ‘pain syndrome’ or some other meaningless crap.
I recall from the alternative dentist a few things he said that have stuck with me.
1) 1 in 3 people with a Nico event do not recover. (I thought I had, and I found myself still of of the three that are not recovered.
2) He said.. no amount of natural medicine, natural therapy, herbal medicine ever cured Nico – the ONLY way to recover is get the bone scraped clean and get the damage out.
On the upside… most people with a Nico problem on average take 6 years to start to get help. I am in this 3 years and so about 3 years ahead of the game. I also know that 2 in 3 people will recover if they get the right help. I have read that some people are helped, or the damaged stopped or the Nicos removed for improvement and help sometimes a decade or more into their health battles.
I live in NZ. There is no one that will help me. I do not think antibiotics alone, even if I can get them will help much, or they might for a while. I need comprehensive medical intervention and that will cost $$$$$$$$ I dont have. I am worried the only way for help will be selling my house and ruining my family’s lives to run to England or America to get in front of clinicians that understand Nico.
I am 47 years old. I have not yet found great success stories online. I suspect that they do exist, and that many people who recover do not come back to write about it much. The only people that you find online generally are the sick and searching so I have not given up hope.. But I am scared and worried how much of my life will be stolen and how much spreading damage I will have as I search for the right people and find the money to get to them. I hope I am 6 months to 2 years away from climbing out of the mess.
if anyone has had success, or good information that they think I might benefit from they can reply or write to me petadowle@yahoo.com
If I recover, or recover enough to have my life quality back I will come back and tell people.
Hi Peta, there is help out there, but I don’t think I will ever find it under the NHS system in the UK, they have neither the time or interest in complex cases. I wish I had realised this many years ago. Once you find that one person who is so very interested to help, the emotional release is overwhelming, the belief they have in you that you are not imagining the pain or infection is so welcome. Keep looking, I have found this page to be so reassuring and helpful, we all live in hope of regaining our previous happy quality of life. Kind regards and best wishes at Christmas, Julia
I would be very happy to expose the poor care I received in not one, but two NHS hospitals. I have absolutely no faith in the system at all now. I am now under the care of a 3rd NHS hospital in 4 years and try not to allow my previous experience to tarnish my impression of them. The consultant did for a change allow me to speak and listened, I am however allowing them a period of 8 weeks only of this New Year before I seek help in the private sector once again, as this seems to be the only place I make any progress. I have now wasted 4 years and have subsequently lost 4 of my beautiful teeth on this journey, but remain in pain and on antibiotics. If there are people reading this page who are just starting on this very painful journey, do not be ignored, ask questions, make people listen and shout very loud at people who dismiss you. I will have the ultimate feeling of satisfaction when eventually I prove to these people that there was indeed a problem all along and that ignorance has only delayed my care and caused upset and pain to both me and my family.
Hello. I have also been in pain for 2 years. It started with niggling pain in my upper right 6th. This tooth had an old crown that needed replacing so got my dentist to prep it for a new crown. Immediately after the prep (a short procedure) I had excruciating pain in the upper 6th. My dentist said it needed a root canal which he did but it did not stop the pain. He said the root canal might need redoing. I was getting very anxious now as I am terrified of dental treatment and the stress of this and the pain was starting to affect me psychologically. I let him redo the root canal but again the pain did not stop. Saw my gp who put me on an antidepressant to control my anxiety. Pain continued so I begged the dentist to extract the tooth thinking this would be an end to the pain. After tooth extracted had severe pain I was crying all the time. This put a strain on my marriage. I had acupuncture and hypnosis but neither helped. Eventually my dentist referred me to facial consultant who tried me on lots of nerve pain suppressants (gabapentin, pregabalin etc ) but they gave me weird side effects that scared the hell out of me. I was put. On mirtazapine antidepressant and over a period of 12 months the pain reduced to a bearable level and I was just getting my life back when in October 2015 I noticed a tender area on the roof of my mouth on the left side just behind my upper left 7th. I knew deep down it was an abscess because that tooth had been root canaled 4 years previously and I was always getting food trapped between it and the wisdom tooth. My dentist wouldn’t do anything. I think he thought it was just me being paranoid with all the issues I had had on the right. He referred me back to consultant. I was getting a lot of ear pain on the left at this time too. My gp said I had an ear infection. I took two lots of antibiotics and then was told my Eustachian tube was blocked and that was also causing the ear pain so had 2 lots of steroid nasal spray. I had to wait to see the specialist at the hospital but phoned and begged for an earlier appointment as I was now getting tooth pain in my upper left 7th and 8th. They did a full head X-ray and diagnosed an abscessed 7th which they removed a couple of weeks later. This was difficult as the tooth was so brittle. So now that tooth is gone but 8 weeks later I am still getting ear pain and pain in my 8th. I also have pain just in front of my jaw on both sides. I have been very stressed with another episode of severe pain and dental phobia. I did come off the mirtazapine in the summer of 2015 when things were improving for me but have just gone back on it. Got to wait until March now to go back and see the consultant. He says my 8th looks ok, my dentist says I need to get over my ’emotional pain’ but I truly am wondering now whether all this prolonged pain on the left and right are a result of Tmd (I clench my jaw when I’m asleep) as well as the original dental problem. I feel like I’ve been left now just to get on with it by the medical profession. My consultant seemed under considerable time pressure when I saw him in December so felt he didn’t have time to really explore the situation with me. My gp just thinks I’m anxious and my dentist talks to me like he thinks I’m a bit loopy. Yes I am a bit loopy but so would anyone be who is in so much pain for so long. Any advice would be gladly appreciated.. I’ve never taken so many ibuprofen/paracetamol in my life before and am using alcohol (not to stop the pain because it doesn’t) but as a mental escape for an odd hour or so at night. Laura.
This sounds awful Laura, but quite a familiar story sadly. I would certainly say you need to find someone who understands TMD to eliminate that first. The pain from sore/tense muscles will often refer pain into the teeth and, typically, doing fillings, root fillings, crowns and extractions doesn’t help because the tooth wasn’t the cause. So then you assume it’s the next tooth and the whole process starts over. Where are you??
With warm regards, Andy
Andy Lane -have you heard of NICO damage ending up in the ear canal?
I have had ongoing problems since a root canal was put in/taken out. Five months later a dentist opened my gum to clean and scrape away a NICO lesion. Two years on and I have pain at the top of my ear canal. (and throat pain). Lots of tests. Then suddenly spontanious loss of hearing in the right ear (due I think to interupted blood supply to the cochlear according to the audiologist and this fits with inflammation). I dont have TMJ. It all just feels so connected to the abscess – root filled tooth – ear and throat pain – nico removed – pain abated for a long while then came back with a vengence – loss of hearing.
I can find in the world good dentists with understanding of NICO and those who will operate and investigate teeth and jaw.
I had a root canal done in another city when I was visiting my husbands family for Christmas. The dentist told me it needed a root canal & proceeded to drill-pull & yank profusely it was painful as they didn’t numb it well- I’m guessing! They did X-rays with a stick but used no cover over me, I was wondering why since I thought X-rays needed them with radiation? He only did a parial root canal on bottom tooth 19 I think it was & told me I would need to have an endodentist to finish it! They told me to take 3 Motrin & 2 Tylenol for the pain. No antibiotics
I left there & went back to Michigan the next day. I was in terrible pain and my dentist wanted to see me. He did X-rays and saw it was calcified and would indeed need treatment from the specialist. They prescribed me amoxillian and I left. I started to feel weird, my mouth gums were acting weird on the right side and then on the bottom not the side I had the tooth done. My lips were on fire! I get cold sores on occasion and it was going crazy I would put tea tree oil on one spot then another spot would hurt- then another on my lip. I started to get a rash around my hips-
I got into the endodentist and they did the root canal and said it went good! That the dentist stopped just in the time before he did any damage- the specialist put me on a stronger amoxillian and I started to feel I couldn’t swallow. So it got worse and I just couldn’t function went to the hospital and got steroids then was prescribed steroids for 5 days. I slept only an hour a night. I kept telling the dentist & endodentist I don’t feel good, they gave me a different medication cydimycin for 10 days- and said the root canal itself looks good. They didn’t do any new X-rays.
My neck hurts, my jaw, head and I have mucus that I need to spit out at times during the day- feels like I have a sinus infection.
I went to my dentist that morning they filled my root canal tooth- I started to feel bad not like myself- was it the new meds? My ears were popping all week. I went to my dr- they said you are fine & probably just getting over the steroids I said I don’t feel good not like myself – and felt sweaty and like I was going to pass out! I was told to sit on the chair and then grabbed her hand saying help me! I ened up having a panic attack in the dr’s office. They called EMS and they checked my heart and it was ok, I came out if the panick attack ok and was sent home.
Still pain- anxiety of if I was going to feel bad- and why was my teeth all hurting.
Saw my dentist because I felt my tooth was not filed down right. He said it was fine & is sending me to a pain specialist Tuesday
I have a very bad headache and jaw pain now- yesterday, I felt the hard to swallow feeling again and took Benadryl twice. It seemed to help- I could hardly sleep! Took a Tylenol pm and used some essential oils for the headache so I could sleep. Just wondering what to do next and worried!
I know this is an old story, but, i wish i could come to your clinic (im in australia), i honestly believe that i have osteonecrosis as a result of the nerves being crushed by tmjd with reduction. I woke up one morning and i swear to you i felt like my jaw was snapping in half,
Asthough my back molars were going to touch and i would have a clean break under my chin. Since then i have had severe jaw pain, locking of the jaw, numbness and tingling of my teeth and gums and i can actually feel my teeth collapsing and moving i have developed gum ulcers and have ringing in my ears. My jaw feels loose and my gums are receding. I have been to dentists orthodontists hygienists,periodontists and drs and they all have a simple explanation ” it’s gum disease you need to take better care of your teeth” i brush,floss use a dental pick, and mouthwash 3x a day (habits formed from wearing braces) i also rinse with salt water every couple of hrs. I have had my teeth cleaned proffesionally several times but it has made no difference. I tell these professionals that i was perfectly healthy 6 wks ago and they dont believe me i tell them about the amount of pain im in and they dont believe me, i tell them that my jaw clicks and hurts and pops when i swallow and they say “oh yeah” and then chastise me for poor oral health.
I am in constant tears, fear and pain, i just want to see someone who is going to listen to me and believe what i have to say instead of thinking that its all in my head.
If this story changes the perspective of one health professional it may be one more person who gets the care and attention to detail that saves their life.
In my case i fear i will not have a mouth left to save by the time some one realises how quickly this is progressing and reconstructive jaw bone surgery does not exist in this country yet, however i will keep trying, i am going to see the physio today in hopes of recieving a tmj diagnosis, and a referal to a orofacial surgeon.
thank you for your story you have given me the courage to tell the physio all my symptoms no matter how crazy they sound.
Omg I’m 38 yrs old and have facial pain lower right side of my jaw area and burning pain up my face and most of those symptoms thank god I came across this
Thank you for offering your help to so many people. I had a temporary crown put in place 5 days ago. My mouth was open for 1 1/2 hours. Two days later I started having shooting pains in my ear. Those pains move around to my temple and my scalp is very sensitive. I also have a sore throat all of which are on the same side. My energy level is down. I did not have any of these issues before. My dentist is out of town for a week. When I called the office they said I should probably go get a root canal. The tooth itself does not bother me. He did some laser gum surgery and the gums are understandably sensitive. I am in FL. I would love to hear your thoughts. Thank you
Hi Beverly, from your symptoms I think this is more likely to be a problem with your temporomandibular joint (TMJ) and/or the muscles that control jaw movements. You need to find a dentist that has an interest in managing TMD; there should be plenty in Florida as it is the home of the Pankey Association that teaches dentists to manage TMD. Kind regards, Andy
Thank you so much for your prompt reply. You are awesome. I poked around a little and the symptoms for TMJ mention pain when chewing, clicking and popping of the jaw which I don’t have. I hope the trigeminal nerve was not damaged. My throat is really sore however the shooting pains are less frequent. I seem to be getting better so I will see where this goes. Choose Joy. Beverly
No, you probably wouldn’t have those symptoms as it’s more likely a muscle problem caused by having your mouth open so long, or the trauma of the injection. Either way, it sounds like you’re getting better in your own and I very much doubt it’s a trigeminal nerve issue. Good luck! Cheers, Andy
Thank you again. I appreciate you.
Hi there, very interesting reads. I’m reading all accounts, hoping to find similar story of pain to give me direction. I have one quick question that I hope you can help me with. I’ve had a white blood cell scan which reveals that I have no infection in the upper left quadrant of my mouth/ jaw which is where my pain is. Can you tell me if a white blood cell scan could detect Pulpitis? I have a fracture in my tooth and the endodontist and dentist disagree on whether or not this could be causing my pain and how to move forward. Since it’s the only molar remaining in the quadrant the endodontist is saying a temporary crown to see if the symptoms subside. The dentist is saying no that a root canal needs to be done.
Cracked teeth are a nightmare Monica. So unpredictable. Both your pieces of advice could be the correct course of action, but sometimes these teeth never settle; I gave just had to remove one for a family member after 8 months of pain where neither approach had helped. Good luck!
Thank you all so much for your accounts as so many of you reflect my story. I cracked two teeth two years ago, one had been previously been root canal led and one hand”t. Root canal work was done on the second cracked tooth and crowns were fitted on both teeth. A few weeks later an infection occurred in the old root canal and the tooth was re root canal led. All seemed to be well until a year later when the pain returned. The tooth on which two root canals had been performed was removed and a few week later the second tooth with one root canal procedure was removed as my dentist believed it must have been cracked. Two months later the pain has returned. It is the pain consistent with an abscess- deep throbbing pain in both upper end lower jaw radiating into my ear. Antibiotics relieve the pain but within 48 of stopping them the pain returns. My dentist does not think it is TN or atypical dental pain, but is not sure what to do. I live in fear of the antibiotics failing to control the pain. Dr Andy Lane, I live in London UK – do you know anyone in the London area who does what you do as I need relief from this pain before it ruins my life or I decide I can”t go on with it any more. Thank you
Hi Sian,
I’m afraid you almost certainly just need these teeth extracting. Once you have cracks causing pain a root canal is rarely a solution. This is a subject very close to home as, after 8 months of pain none of my colleagues could help with, I had to extract my own wife’s molar tooth – she says it’s bliss!! Any dentist will be able to this for you, nothing special 🙂
Good luck! Andy
Sorry Sian, just re-read this and realise you have already had them extracted. I suspect there is some locked in infection remaining in the bone, which needs to be cleared out. An x-ray might help but ideally an exploratory operation needs to be done. I’m not sure I know anyone in your area but will enquire. With warm regards, Andy
Dear Dr Lane,
Is it possible to come to your clinic? Can you do the exploratory operation? If so can you e-mail me on the e-mail supplied.The antibiotics are beginning to stop being effective and I am just taking more and more of them to control the pain. I’ve had numerous x-rays and a scan all of which my dentist said showed nothing. No one seem to know what to do and I’ve even been told it’s all in my head, which I can assure you it’s not.
Thank you
Sian
Of course Sian, I will email you details.
With warm regards, Andy
Hi Andy I’m in
bromley Kent . Could i email you my story as i keep having trouble on here . My pain has cost me a relationship and to have more children apart from changing me as a person . At the moment I’m laid up as had car accident and broke my neck fractured my face in which scares me as my pain seems worse again and not sure if it’s because of fracture or not . Thing is I cope with pain every day the medication just controls it
I really would like you to hear what happened to me
Regards
Mrs s Lintern
Of course, andylanebds at gmail.com
Sorry, don’t know where Sian came from Sue, stupid autocorrect 🙂
Thank you so much
Dental professionals need to listen to patients and believe what they are saying, why else enter the profession, many things go wrong during the course of a dentists life, the mouth is full of nerves and everytime a patient allows or asks a dentist or hygenist to carry out a procedure, there are risks
the profession if it wants to be considered that should be brave enough to acknowledge this and possibly warn patients that there are risks just like they do in a hospital before any invasive procedure where a patient reads this and signs off on it and own up if things go wrong. Their colleagues should be honest and look after the patient first instead of fobbing them off. this is very prevalent in small knit communities and small countries like Ireland
I agree with Mary, It’s shocking what I have experienced recently, in having implants done at a local dental school. Faculty is taking a hands off approach and the resident seems woefully uninformed about the common complications of implants such as peri-implantitis and nerve pain.
I would really appreciate an opinion on my experience. On January 26,2016 I had two dental implants placed at WVU dental school by a resident. Immediately after the implants, I presented with significant numbness and shortly afterward, severe pain which persisted. Of course, I let them know at my two week appt but was assured they just stretched the nerve and it would heal. Two more weeks with pain and numbness. I went in. After a cbct they saw nothing (I question this.)but upon looking at the gums, found serious deterioration and immediately took out the implants and found bone loss too. It looks really bad gum recession on the adjacent teeth that she is denying is new(I have records to prove otherwise). It fits peri-implantitis exactly but this has never been mentioned and they are saying it’s not a periodontal Issue and I don’t need to see a periodontist.
I still have pain and numbness but it’s changed after they took them out. 1.5 weeks ago. I developed serious TMJ symptons since the surgery and have a swollen jaw joint now, that she denies is new. I have never been diagnosed with TMJ, but do have issues with clenching.
I desperately would like to get opinions on my belief that the implant was pressing on a nerve the whole time. I went in yesterday and told her I still had pain, minimal reaction. She wants to believe it’s an allergy or some health issue I have.
I’m very concerned that she is not registering the nerve pain as the implant pressing on the nerve and the gum/ bone infection as peri- implantitis. It’s as if she doesn’t even know about it. I requested to speak with a faculty/ experienced oral surgeon, but no one came to see me.I have to decide whether I can trust them to make another attempt at these implants after bone grafts. I still have pain throughout my right side and some numbness.
I am getting suspicious that faculty are avoiding my case, as no one addressed me about the chronic pain and gum/bone infection or has talked to me at all since the initial surgery. I feel like I am in the Twilight Zone with no one recognizing what seems to be plain obvious to me. My every instinct tells me I’m being misguided. If you could shed some light on my situation, it would help so much. Even just some peace of mind would be nice. Thanks for reading this long post 🙂
I’m sorry Melissa, this sounds like a horrible situation, but I really can’t tell exactly what is going on from the information you have provided; it would need a physical examination and sight of your scan. It could certainly be possible that you have a jaw bone infection, and if you have it will need treating before it can spread further. Please find a surgeon who knows about this stuff as soon as you can. You certainly should not consider implants until the pain and numbness are resolved.
regards, Andy
Hello,
This was a very interesting read, but none seem to apply to myself, as I’ve not had any dental work done over the last couple of years.
My query is this – can you get TMJ or whatever it is, literally overnight?
I woke up one morning last week and it felt like someone had socked me right over my left ear / jaw area and the ache was continuous for the rest of the day, radiating up over my forehead area as well, but come evening and it eased off.
I went to my GP, who checked my ear and suggested I visit my dentist as my ear was clear / clean, so I saw my dentist, who put a finger into the back of my mouth on the left side, and while it didn’t hurt straight away, a mild ache came on but nothing bad. The dentist didn’t examine my teeth or anything, she seemed pretty confident from my description that it is TMJ and that I need a splint made ( which I’m still waiting for ), she said my muscles felt really tight..?
Any idea what could be causing this, seeing as I’ve not had any dental work recently for this pain to keep happening every day. ( worse in the mornings and eases off toward end of day ).
I do have some tinnitus, but mainly headaches and jaw ache.
Regards.
Simone.
Hi Simone. From what you describe I think your dentist is quite correct, but wearing the appliance is the way to be sure. TMJ Dysfunction (TMJD) can certainly come on overnight; it sounds like you must have started clenching or grinding your teeth, particularly during sleep, hence the reason why it improves through the day and is worse on waking. There are several possible reasons for this, but the most likely is stress. Good luck with your treatment, do let us know how it goes!
Regards, Andy
Dear Dr. Lane,
I recently (jan -febr 2016) had to do a rootcanal treatment , due to neglect of my dentist to take my complaint serious when I told her I suspected the a big almagaam filling I had in my upper right jaw was leaking as I noticed a metal taste in my mouth. Also the gum between that tooth and my wisdom tooth was always and still is bleeding when doing flossing. I underwent two temporary filling for the treatment before getting the permanent filling. Since the second temporary filling which was oversized i started to have pain , actually during the treatment I experienced a lot of pain. I was prescribed amoxilin 15 capsules by the dentist, to use for a 5 days 3 times per day to prevent any infections and my house doctor also prescribed diclofenac (voltarin ) 3x per day for 5 days. The pain start in my right upper jaw than expamded to my ear and sleeping bone then the top og my head on the right then to the middel then also my neck and atlas, than my back then also the left part of my head and pain in deep in my ear both left and right , but the pains seems to be moving .. it is flairs up. also on my heart side i’ve been feeling pain burining pain , it moved further to my spine and even my legs. I’m feeling pain shoots. After she removed the oversized filling the pain reduced immediately .. but the burning sensations in my head pain in my ear and behind my eyes are still here and it seems i’m entering a second phase of misery. I been to my home-doctor several types , even had a conversation with a neurosurgeon but he mentioned dental nerves don’t belong to his field of study . I’m consedering to use amoxillin – for bacterial infection again. Please can you advise me what should be done. we don’t have endodontists here is Suriname,but one is coming end of next month .
A high filling can do all that, it is weird though isn’t it? I can’t really advise you other than to say that you really need to be seen by a dentist to get this sorted out as soon as possible, please don’t self-prescribe antibiotics! Good luck, Andy
Don’t have an e-mail set up. I am a 64 year woman that can relate to this lady. I have severe head pain on left side of head. From hair line to top of head from temple up. So sever I throw up from pain
I have been told by my dentist that I have TMJ and TMD. I have been told by my neurologist and it looks like I have migraine headaches, neuropathy because I had shingles like the lady writing her story. I had singles at age eleven and then again two years ago when I turned sixty two. My family Dr. Is also an internalist and tells me that Thunder Raptors he is because of the jingles the nerve endings have not settle down I have been suffering pain for 4 years already and I just don’t know what to do anymore I cry a lot and I just feel horrible all the time.my head hurts,my eye hurts and turns red the left one, I get pain thar rates from left temple to top of head and to my neck in the left side. I feel pain running from ear to cheek and pain from nose th cheek and everyday I’m in pain
Pain radiates from top of head to neck. I’m also sesitive to lots of medications which makes treatment hard because I have IBS, diverticulosis and diverticulitis of the large intestines. This makes me really sick too sometimes I cannot function. I just wish I could find a doctor that could help me. The doctors are trying but nothing seems to work my name it’s Mary Helen Moreno and was also told when I turned fifty years old that I had RA and Sjogren’s syndrome, that I had fibermalaga. I’m always in so much pain. If some can help me my phone is 361 877-6245. I live near Corpus Christi,Texas. Please help me find the right Dr. To treat one thing at a time. Thank you so much!!
Hi Mary. This sounds like an awful situation, I’m sorry to hear how bad it has been for you. Please ask (insist!) that your local dentist to refers you to an expert in TMD in your area to get a proper diagnosis. I am sure there will be one not too far away, I just don’t know one personally as I’m in the UK. Good luck in your search. Best wishes, Andy
Hi Dr.
This is Jatin Mehta from India.
On 28th March 2016.. Our dentist carried Root canal treatment of my 5 years old daughter on right side down tooth.
From 29th onwards …she is having constant pain in middle of the Right cheek… and very very painfull. She is good for 6 hours if given ibugesic syrup. After 6 hours again pain starts and so on…..am worried for her. I think ..It’s TN. Dentist must have damaged a nerve while RCT by mistake. I am ready to come to ur place ….will you take this case….is there any positive chance u r thinking for her…. its just 6 days of pain …but I know if not treated it can b more worse…..Please help mE. My what’s up number is +919619155555.
Waiting for reply sir.
Jatin
It is very difficult to do a root filling on a deciduous tooth, most dentists would just take it out, but your dentist tried to save, which is good, so you need to take her back and let him sort it out.
Hi again Mary. I found this office near you – maybe give them a call? (361) 851-8274
https://www.ccsmiles.com/tmj/
Dr Lane,
I am outside Philadelphia in thr US, originally from NY. this post has offered me hope. I was recently diagnosed with atypical TN but I think something else is going on. I had two retreated root canals, then both apicoectomy because they still felt strange. multiple dentists and endos saying nothing was wrong with my teeth….went to ent, nothing with sinus, then went for a dental cleaning and hygienist noticed a periodontal pocket behind the teeth that were treated (insisor and premolar on left), she cleaned it but it still bothered me. went back and dentist said he thought maybe tooth was cracked so he extracted it and put an implant in, tons of pain for a week after in the implant site and canine tooth next to it, went back and he root canaled the canine and said pulp was dead. still lots of pain, they did a ct and sinus was cloudy so sent me to ent who put a scope though my sinuses and saw infection he thought was caused by dental work. at this point the implant spontaneously came out. they flushed the extraction and gave me 10 days antibiotics. still having some pain I went back after I started to feel something sharp in my gum, by the time I got to dentist my gum was smooth again and he said some of the bone graft he did probably fell out. can you tell me if this sounds likeep it may still be a dental issue? is there a dr in philly or ny you could point me to? thank you in advance.
Hi Jennifer, this definitely sounds like a dental infection that is tracking to your sinus lining. I’m afraid I don’t know anyone in your area that does this stuff, but all you need is someone who accepts that it really is an infection in the bone/sinus and treats it as such, rather than labelling you with”atypical facial pain” and putting you on drugs. Good luck! With warm regards, Andy
thank you! it looks like there is a facial pain oral surgeon term at a hospital in philly I will look into. I can’t believe how difficult this has been.
Hiya im having the same problem😫 I was put to sleep had 2 teeth removed Monday,Tuesday I had a reaction and was swollen from head to toe, feel like ive got a ear infection my nose hurts my jaw is killing with a lump in it ive got a sore throat sore neck,feel sick,hot sweats and my head is banging so much I could put it straight throw the window, this pain is all down one side, I don’t no what else to do, ive only been like this 6 days now and broke down today I actually consider just taking all the tablets I have, Natasha how you have dealt with this is beyond me, any suggestions?
Having same symptoms but no money to see a dentist
I’m sorry to hear that, where are you based?
Im an Aussie living in the USA -G’day, I just had a root canal done on my lower left 2nd from back molar at a new dentist on 6/30/16 as I needed this problem fixing ASAP because of much pain due to large cavity. After xray showed cavity went all the way to nerve and being told I needed a root canal I asked approximately how long the procedure would take and was told about 45 minutes to an hour. After needing to be locally anaethathized very deeply a number of times, this procedure to the point of a temporary crown took about 3.5 hours. Apparently I had an infection and left with a prescription for amoxicillan, painkillers and to come back the next day and be fitted with the new permanent crown which was a Friday. The temporary crown lasted about 30 minutes though I was warned of this and told not to worry and just to throw it away. Friday morning and it was time to be fitted with the permanent crown, this was done by the dental assistant who not only fitted it but also finished perfecting my bite. By late Friday night I started to have a lot of jaw ache and also pain locally at the root canal site. This continued until I visited the ER on Sunday as I had run out of any pain relief and my dentist by law was not allowed to prescribe whilst not in the office. I also wanted to switch to clindamyacin as I was worried the infection was getting worse due to pain, fever, which my dentist agreed with etc.. On Tuesday after spending the weekend in bed vomitting quite often since Sunday night, the Dentist had another xray done and again the root canal looked the same though she agreed that you cannot see infection from a 2D xray. She took a look at my bite and suddenly started drilling away and explained afterwards that my bite was too high which was probably causing problems with pain etc.. It is now 7/8/16 and my TMJ problems continue. I have finished the antibiotics, I stopped using clindamyacin on Tuesday because of the vomitting and just kept using the amoxicilling. I have kept using Ibuprofen and have basically self diagnosed myself with a TBJ stretch injury so using ice therapy, heat therapy, natural pain relieving gel from physiotherapist and massage. I am also going to limit opening my mouth, chewing, talking, yawning.
I am interested on reading all of these blogs after so many root canals of the problems from deep local injections going wrong hitting nerves etc.. but I am going to see how I go over a couple of weeks.
After reading the above stories over the years, I feel lucky to have gotten away with the amount of pain and irritation I am left with at this stage.
I wish everyone well.
Hello, my story is long, 4car accd. Which involve serious neck injury. Almost died from last 2013 . tmd awful., now dental. Left side whacked hard.. Lower and upper need 3 implants there. Can’t do any drugs ,whatsoever, had hair falling out, CFS., servers outbreaks and toxic poisoning from mercury.. Cannot go through anymore pain., have an oral surgery., but putting off. Holistically is the only way I can go.. Lazor for staff infection. And it really helps…. Need help jaw cannot handle being open.. Dia
Very sorry to hear of your plight. Where are you located Dia?
Hi Andy. I have been having a headache issue since the last couple of years. In the last 6 months, this was aggravated. I faced headaches for 20-25 days at a stretch. Gradually, I realized that I had severe muscle pain on the upper left and right jaw behind my last tooth. My facial muscles also were paining. On consulting a dentist, she said that this is a condition of muscle swelling / injury. She gave me a Splint to wear which I am supposed to wear for 3 monts, post which she said she would suggest the treatment. I was ok for about almost 2 weeks after wearing the splint. However, it has started paining again now and its chronic. X-ray is clear and does not show any negative signs. I have now been given a pain killer for the next 4-5 days. I am suspecting this to be a condition of Trigeminal Neuralgia. Please advice.
This sounds much more like TMD. I suspect you were given a soft splint and that you are clenching your teeth. A different appliance could help, or you might be a good candidate for Cerezen (an in-ear appliance that controls bruxism and clenching) http://www.cerezen.eu/uk/ – let me know where you are and I’ll see if I can sort out something for you.
Dr lane, my name is carey and I’m going crazy here im at my wits end!!! One June 3, 2016 I was waken to shooters stabbing electric pain I thought maybe I was dreaming so I sat up in my bed for a minute or 2 and yet again boom same things happening it scared me so I got up went into the bathroom and looked at my tooth thinking I must have a bad bad cavity so mind up this was Memorial day weekend!!! I didn’t know what I was gonna do so I called the emergency # the Dr got right back with me get said yel up have abcess I’m calling in antibiotics and medrol dose pak so I startEd all meds hoping it was going to work it seemed to help just a tad them as quickly It came it was gone just like that but I could still feel thumping throbbing but the shooting pain washy there thanks god!! Then on July 5th I was told I need root canal so for some reason I got 2nd oppinion upon being with new dentist she said up have not infection that tooth is just fine I asked her what could be causing my pain she said from grinding my teeth . So I had to go back in a wk to get filling so my next appt was July 19th more x-ray done of just about all teeth pictures weremail taken the Dr Said I don’t see anything wrong with the tooth u keep saying is shooting pain etc…. I said look into know theres something wrong the x-ray showEd nothing wrong I broke down crying cause when u get this shooting pain it hurts and makes u afraid cause u know what to expect! Now all my problematical I’ve been having my right eye and eye brawl has been twitches none stop them ontop the right side of my head in my hair was hurting like soar to touch if I even too my fingers and lightly touching that area oh wow soar and tender I thought may be in had my hair pullEd up to tight but that wasn’t it at all I made sure not ingrown hairs pimple or scratch was there and I looked nothing so as of right Now its still soar after I got filling another Dr came in and said to me up could have face pain u could have a tumor or nerve damage now looking over this page I’m in awe cause it’s me to a T! Now what do I have to do and how do I explain that to my family Dr and what kinds of meds do I need to help me I don’t know what next step I need to do and can I just hope to a pain Dr like surgeon???? Please help me doc thanks in advance. Sincere carey
Hi Carey, this needs diagnosing properly. From the history I think the person who said you were clenching might be correct. You could also have a cracked tooth. Maybe ask to be referred to your local TMD expert and take it from there? Good luck! Cheers, Andy
Hi. I have had atypical facial pain for around 20 years but it has always been a come and go sort of thing with triggers being dental work that would mildly flare it up. I ended up with root canals on my upper teeth #10, 11, 12, 13 for unknown reasons. They were done between 1998 through 2010 They are sore and 11 shows a shadow at the root tip on xray. Tooth #14 was a failed root canal last October and extracted in December 2015. I replaced old fillings in the two back molars one on top #15 and one on bottom #18 last May. I began to have lower jaw pain at this time. Never had any lower jaw work done before this filling. The teeth never settled. #18 was cracked and a root canal back in June made it worse so it was extracted back in July. Ever since that extraction I had bad face pain and #19 began throbbing. #15 also never settled after the filling was replaced and tested endodontically dead so was extracted in August. And #19 tested painful to hot stimulus which was relieved by cold so was extracted as well since I couldn’t afford root canal and they were not working anyway. I feel like this was a big mistake. That was last week and ever since then my face pain has exploded into intense constant pain. I have lower jaw pain along the jawline and chin and upper jaw pain into the cheek and all the teeth and gums on the left side are sensitive and painful. Even the upper root canalled teeth. Talking hurts, eating, heat of any kind, like a hair dryer, touching my face, moving my face. Cold helps. I keep ice on my face. Ibuprofen helps a teeny bit. They tell me it is atypical trigeminal neuralgia. I have never had face pain this bad before. I have taken antibiotics to no avail. In fact, a lot of them. I live in the New York area in the USA. Thank you for your time.
Hi Julie,
This sounds awful. The only person I know that does this sort of treatment in New York is Michael Gelb, but I’m sure there are others. http://www.gelbcenter.com/ (Madison Ave + White Plains)
Can’t believe reading this ladies story is like writing it myself but unlike her did not receive a cure and 20 years on still in pain on a vast amount of medication including morphine. So many factors of this ladies is so like mine in every way .I is there were many more doctors who could help people like me instead of making out the pain is all in their mind
Regards
Mrs s Lintern
It’s very sad isn’t it Sue, where are you based?
Hi Andy I’m in
bromley Kent . Could i email you my story as i keep having trouble on here . My pain has cost me a relationship and to have more children apart from changing me as a person . At the moment I’m laid up as had car accident and broke my neck fractured my face in which scares me as my pain seems worse again and not sure if it’s because of fracture or not . Thing is I cope with pain every day the medication just controls it
I really would like you to hear what happened to me
Regards
Mrs s Lintern
Feeling extremely sad reading over these posts, so many of us left to suffer in pain and told we are “imagining it all”. There is a real problem with ignorance amongst some health professionals, delaying our care and treatment and making it so much harder to rid us of infection once its finally diagnosed. After failing in my battle to make two hospitals recognise their failings, I fear that so many Oral Surgeons are continuing to dismiss people with the label of Atypical Facial Pain without any real investigation into an individuals symptoms and case. Its a frightening, lonely, frustrating and painful journey.
This is so very very close to what I have and continue to experience. I was diagnosed with trigeminal neuralgia. I think it’s much more than that. I have chronic pain from neck injury. I suffer with depression treated by celexa a SSRI, doesn’t work. I have sleep apnea, insomnia, restless legs, pain in head, scalp, I constantly rub it, I have TMJ from clenching my teeth, I could go on. what do I do? Please help me.
Where are you located Francine? There should be plenty of things that can be done, but you need a better diagnosis I think. With warm regards, Andy
My name is Melanie. I live in Philadelphia, Pennsylvania. In January of 2016 I had a tooth pulled (#2 – upper right maxillary). It was mildly painful to put pressure on it and it failed the tap test. It had been root canaled twice so it was extracted. After the extraction, I was given Amoxycillin. On day two, I had chills and low grade fever. Oral surgeon suggested I had the flu. He did upgrade my medicine to Augmentin and I was fine in two days. About a week later, the phantom tooth pain started. I thought he forgot to take out a root or something. I went back to the oral surgeon and he said it all looked great. Tooth pain was off and on for months combined with bad headaches – the headaches stayed for a few days and left each time. In July of 2016, I had a cap put on a dental implant on the bottom. The dentist held my mouth open for two hours. About three days later, I started with a headache that never stopped (occipital region, temples, lower mouth joint) along with dental pain where tooth #2 was extracted. In August I started with chin tingles on same side that have now evolved into chin jabs.
Fast forward November of 2016 – I’ve been diagnosed with atypical face pain and on Gapapentin 200 mg three times a day along with 20 mg of nortriptyline at night. It’s been 4 weeks on medicine and I still have headache, tooth pain, and jaw pain.
I’ve been to to another oral surgeon and a very well know neurosurgeon who thinks I have peripheral nerve damage when tooth was extracted. My dentist sent me to a TMJ socialist who thinks I have TMD. I have zero occlusion on the right, and arthritis in my jaw joints.
I’m losing faith in medical help here in US.
Hi Melanie.
Has anyone cleaned out the area of the original extraction site? That would be my initial approach because of the timing, but it does sound a complex problem so I doubt it will resolve without quite a bit of work. Dr Wes Shankland in Ohio might be able to help.
Good luck, Andy
I came across this thread while desperately looking for information about facial pain and was relieved to find I am not the only one… For 1,5 years ago I had a cold which at the time seemed like a perfectly normal cold – sore throat, runny nose, low fever etc. However, for about a week my nose ran like water, which was slightly weird and then I started to experience slight discomfort on my nose, which slowly developed into this horrible pain I have today.
I was unwell for about 4 months – very weak and with low grade fever, then somehow these symptoms went away and only the pain remained. The pain is located on the right side on the nose bridge and it mostly feels very localized as if there is a tumor just under the skin. I would describe this pain as pressure and tension, and sometimes it feels as if there is a wound under the skin even though the skin is never red, but there is a small lump (the doctors say it has probably always been there, just the way my nose is). During these 1,5 years I have taken antibiotics, NSAIDS (which have no effect at all on my pain), anti-depressants, all types of supplements (you name it). I had two MRIs and a CT scan, which only revealed a polyp on the entrance to the maxillary sinus (not in the exact place of my pain!), which doctors dismissed as irrelevant. The MRI showed a possible conflict between a nerve and a blood vessel in the brain, but a neurosurgeon I saw said this for sure was NOT trigeminal neuralgia (since my pain is constant ache…). The only things that sort of help is gabapentin, although I only noticed a difference going from zero to 100 mg, but the following increase (I went up to 1200 mg) had no effect on the pain and lidocaine cream, which I put on that painful spot (only helps a little bit for 30 minutes or so). I had many blood tests (including for Lyme disease and ANCA test for vasculitis) and everything was normal except low vitamin D and zinc. I also had a lung xray (I don’t cough, have no other pain and no other symptoms except slight fatigue but who wouldn’t given this constant pain…). I have seen several ENTs and neurologists, who are just perplexed about the cause of my pain. My pain doctor thought that the cause of the pain was not neurological, but had no idea of what it could be! The pain is constant, but somehow I am able to sleep at night and I noticed that it gets more intense with physical activity. Sometimes I feel so hopeless and spend my days searching on the Internet (and crying), but nothing really sounds like my pain… By the way, I live in Sweden (the public healthcare unfortunately is not great), but I was wondering if anyone have any suggestions as to where to look for answers. Could this be some type of atypical facial pain? And can a simple cold virus cause such an extensive damage? Should I look for more ENTs or neurologists? I know that here most people have issues with their teeth, which I don’t, but perhaps some ways to address this horrible pain are similar. I would be very grateful for any ideas or suggestions. Best, Anne
Please help me I have been I’ll since2010 I was improving by t now symtoms are worse I wish that i could be attended too..my issues are more complex however a little bit of lady who wrote mine started after a failed root canal and extraction and my health and life are exsistance nobody left stems my family do not take aetiosly or sympathy j st George y told off all the he time nobody reasons with me I live on pain meds and antibiotics my health has gone help you thank you
Hi Angela, where are you based? Email if you prefer: andylanebds@gmail.com
Dr Lane, I could really use your input to advise if you think that this could be my case as well. I’ve never experienced pain to this degree in my life and I have been through some very painful experiences including waking up during a major surgical procedure. I’ve had a dental abscess in the past and while painful, I didn’t experience nearly the degree of pain that I am having now. I had a very large amalgam filling in tooth # 19 (US) which I think is LL6 when looking at the references above. I was told at the time that this filling was placed that it was “very close to the nerve.” The filling fell out and the tooth abscessed which was confirmed by dental x-ray. I now have pain so severe to the left side of my face that I couldn’t possibly pinpoint where it is coming from. The pain seems to come in waves starting in my left jaw. It feels as if it is traveling from my jaw, up the left side of my face and all the way to the top of my head. The pain is accompanied by severe tensing of the muscles to the point that palpating over my left temple is extremely painful. I don’t palpate the muscle over my temple because it can trigger the muscle contraction which also seems to trigger a “cycle” of the intolerable pain to my lower jaw and face. It truly feels like cycles that start in my jaw, up through the side of my face and through my temple. Does this sound at all like an infection of the IAN or since there is muscle involvement do you think it is something else? I would greatly appreciate your input. Thank you.
Hi Dawn,
Yes, in my experience the pain and muscle tension you are experiencing could be directly related to the infected tooth. You do need to have it treated urgently.
Good luck and best wishes,
Andy
Thank you Dr, Lane. I saw my dentist on Friday and was prescribed antibiotics and pain medication. The pain medication is strong but does not even begin to touch the pain. I’ve tried to do research about this and from everything I’ve read, if I hope to have the pain go away for good then I have to have the tooth extracted. Is that correct? I would prefer to save the tooth but not if there is a chance that the I will continue to have this pain.
Thank you again,
Dawn
Have you had the tooth opened and drained yet? If not that must be done first. Sadly, if the above has been done then extraction and a really good clean out of the bone around the tooth may be the only way to deal with it, but your dentist will advise I’m sure.
Best regards, Andy
My dentist thinks I’m just a big baby and that this is the average abscess just like any other abscess. I’m assuming, from his reaction, that this is a rarely seen phenomena???He basically blew off my concerns regarding possible nerve involvement (aside from the nerve directly inside of the tooth, of course.) Yes, it has been “drained” and we are waiting for the pain to subside to make a decision on the final repair or extraction.
Thank you for your input and I will let you know the final outcome.
Dawn
Hi this is very similar to my story this past 7 months , is was going through a stressful restructure and redundancys at work for two years , then when it was over i started with toothache I went to see my dentist who couldn’t find anything wrong just sent me away and told me to use sensitive toothpaste, that didn’t work so we thought it was the UL6 tooth so he replaced the filling but that didn’t work so he though it may have a fracture so he did a root canal, then that didn’t work so he said there was no other option but to extract, it was a difficult extraction which left me in excruciating pain,twould weeknow later I was going on holiday to tenerife still in pain, I spent the first 12 hrs in bed , then we found a dentist where he found an infection over the UL5 he prescribed me antibiotics, that didn’t work so I went back, he cut open the gum and said the bone is destroyed, he removed the infection and cleaned the socket out explaining it had a dry socket, so he drilled in the bone to make it bleed, this all dI’d nothing for the pain, the holiday was ruined. I returned home and saw my dentist who confirmed I had a dry socket and referred me to the hospital, I had exploration of the area done under local anaesthetic, he said it had a broken buccal bone and ground down some bone, this did not take my pain away I had had 3 lots of antibiotics byou this time, because I also kept getting reacouring infection, the oral surgeon then started treating me for nerve damage wI think carbomazepine which had no effect on the pain just made me dizzy and sick, I had a nerve block through the cheek which only gave me about 2 hrs relief, so he put me to sleep and pulled a large slab of gum back to have a look, my pain didnt go away, he said the bone was fine now so he was happy for the dentist to look into the other teeth, the UL5 had a root filled tooth with a fracture in it and a crown placed over the fracture, the dentist found a absess over this tooth so it was extracted, once again I gothink another dry socket even though it wasn’t a difficult extraction this time, I was in pain still for 5 weeks after the extraction but just put it down to dry socket, but thenot I started with pain in the UL7 I was told I had decay behind my filling so needed a root canal, but they couldn’t fit me in to do this for 3 weeks, so in the end it became infected so I got an emergency appointment to have it extracted, once again it got a dry socket, it has now been 4 weeks and I’m getting pain in the wisdom tooth next to the extraction area, my dentist is talking about facial pain and referring me ,but they did nothing to help last time and didn’t find the problem so I’m getting so fed up and don’t know where to turn ,would you be able to help, I live in Chorley so not to far away from your clinic.
I have just read this horrific story and experience of this poor women ‘s nightmare with root canaled teeth and extractions. I my self have been dealing with some very similarl symptoms after 2 root canals were done on #s 6,&8, teeth. I never have had such pain in my upper gums always throbbing and constant neck pain, stiff daily, and cramping back muscles also. The oral surgeon removed # 8, and said he cleaned it out, but there is a bubble like lesion left on my upper gum just above were he extracted it, but he said it needs more time to heal. But I continue to get worse with facial pain and gum pain neck pain daily. I think there is infection still left in the bone where th root canaled tooth was., and he, the surgeon is in Denile.Where can you find s good oral surgeon that knows how spot these cavitations and go in clean them out of all left over infection
May I ask where you are located Tim?
Three months ago developed ear pressure. About 2 weeks later what I call a ‘nerve ping’ under the left corner of my mouth in my chin. It became sore to slightest touch and began feeling as if molar in that area (no tooth next to it and the next one is a wisdom tooth) feel ‘sore’ and gum burny. Area under check a bit swollen. Saw GP-diagnosed sinus infection and prescribed Amoxicillin. Was a Friday-by Monday felt worse and told to see my ENT. He examined me, ordered a sinus CT, and told me to extend my antibiotic by 5 days. Also said could have dental issue. CT of sinuses good. Saw dentist. Examined, tap tested, did cold test on root, xray, paste for sensitivity and paste for bacteria. Said all well except receding gum and appeared a ‘nerve issue’ involved. At week three woke up with ears having popped open and bad pain in them for couple days. At this time, terrible burning pain in jaw landed me in ER. Also feeling of pressure in neck under ear on that side. Jaw and neck xray and cat scan w/contrast fine. Technician mentioned dental issues so was alert for that. ER dr said possible trig neuralgia. Followed up with GP. She said maybe ear shingles so blood work for active Zoster. Sent back to ENT. Ear exam and blood work was clear. Ear gradually felt better and jaw burning stopped. However, the ‘nerve ping’ in chin/jaw remained and discomfort around tooth. Sent to Neuro. MRI and CT of head done-all good. Diagnosed Atypical Pain. Last couple weeks ears have deep pain/itch at times and continue with nerve pain and burning pain around the tooth. Also a ‘pulling’ pain behind bottom front teeth. Seeing GP tomorrow for checkup and will have another look at ears/throat which sometimes feels scratchy on the bad side when ear acting up. Regular cleaning/check with dentist coming up in three days. My question is this: If these last two appointments are good, and with all the testing, can I rule out a dental issue? I am not in excruciating pain, but it is constant while awake unless eating-at night not an issue. Sometimes background mild pain, sometimes a bit worse. The duration and fear of something missed is what is concerning me. I also get episodes of itching around the face and have just assumed allergy related. I am just hoping it all eventually goes. Any thoughts? Thanks!
I have just read this story while researching about my own current condition, and I found it very inspirational. I am so glad you were able to help this poor woman, the amount of suffering she endured is phenomenal. I myself am currently having persistent pain in various teeth after using an at home teeth whitening kit provided by my dentist, it’s been 6 weeks and I’ve seen several dentists, an endodontist, and have an upcoming appointment with a maxillofacial surgeon. I’m no doctor, but I’m wondering if the chemicals in some of these teeth whitening products have the potential to trigger underlying conditions in some people? I keep being told that they are safe and unlikely to be the cause of my problem, but the fact remains that I had no dental issues or constant pain prior to using this product. Not that my problem will turn out to be the same/as severe as this woman’s, but it’s just something I believe needs a lot more research into. Anyway thank you for sharing this story.
Just an update on my situation. My pain gradually worsened in several teeth so I went back to endodontist who did more pulp testing. One tooth (top left eye tooth) did not respond at all to any of the tests, X-rays showed that the small black margin they found around the root last time had basically remained the same. The problem was, he was reluctant to do a root canal at this stage as he felt my symptoms I described to him sounded neurogenic and did not match up with what he was seeing. My symptoms being quite constant pain in my top eye teeth and occasionally bottom eye teeth that worsened throughout the day, does not respond to basic analgesia, does not wake me at night, and does not start up again for a period of time when I wake up. He spoke to a pain specialist in Sydney who gave the go ahead to do the root canal before he would see me.
So I had the root canal on the top left eye tooth two days ago. The tooth remains very sore and sensitive at this time, the pain in the other top eye tooth comes and goes, and gets quite severe at times, and I get random sharp pains in the bottom eye teeth that do not seem to be precipitated by anything. The only medication that helps the pain is Oxycodone which was eventually prescribed by my GP when nothing else worked (codeine/paracetamol, pregabalin, ibuprofen). I am awaiting an appointment with the pain specialist, who will hopefully do more testing to see whether the pain is neuropathic in origin.
I was just wondering what your opinion on my case is? The pain started 2 months ago after using an at home whitening kit bought from my dentist (18% carbamide peroxide), which I only ever left on for 20-30 mins and rarely used. Prior to this, I have never had any dental work (no cavities or fillings), however I had braces for 18 months when I was a teenager. I haven’t had any traumatic injuries to the affected teeth. I am 27 years old and have no health problems. Your opinion would be greatly valued, I am going through an awful time. Thank you in advance.
Note: When completing the root canal they found that the top left eye tooth was completely necrotic and had a small hollow area in middle, which they said was indicative of infection. The endodontist believes my tooth had not been in that state for a long time. I am concerned that the other painful eye teeth may be in the early stages of dying also, although they are still responding to pulp testing and look fine on X-ray (I don’t trust X-rays anymore as my necrotic tooth showed up normal in about 6 others taken in the last 2 months!).
Hi my name is Jacqueline, and after an abscess due a wisdom tooth I had a lot of pain in my face and neck could not swallow etc, after a few more visits and antibiotics I had the back lower left wisdom tooth out, a day later I could not swallow felt like I could not breathe stayed up all night in agony as soon as my dentist opened I phoned them was asked to go up straight away the dentist said I had a deep rooted infection and needed to go straight to hospital with a letter from her, I was seen by max fav and they said they could not feel or see anything I felt like I had swollen a golf ball, was given more antibiotics and and sent home, feeling very unwell went to bed early at about 10.30 that night I felt like I could not breath, my husband took me straight to hospital they assessed me and was transferred to aintree hospital in Liverpool was admitted I was in so much pain and very scared could not eat sleep was on drips more antibiotics etc pain relief was not working , it was the weekend and I kept asking please can you scan me they said just needed the medication to work and on the Sunday I could go home now if wanted or stay in the hospital I said I was staying in because I knew something was not right, the following morning after terrible night of pain I could barely speak or open my mouth the team of doctors came around as usual and one doctor took notice that I was not to well, he went and got someone else who straight away did the camera at my bedside then sent me down for a scan I ended up straight in theatre had infection drained and two very small drains in my mouth and on oxygen for few hours, was sent home two days later and was given sticks to stretch my mouth as I still could not open my mouth very much, I can now open my mouth but since have been having pain on and of a few times a day in my jaw, ear and neck things have got worse have seeing the ent and had camera twice now each time the experience is worse they said need to go to speech therapy because my vocal cords are tight and my tongue has been numb since I went to theatre they have put me on medication for reflux as they said that is what is causing my burning throat, I have been to my doctor this week because of the pain in my jaw, throat and ear have coughing, having really bad dizziness and vomiting,I have put on more antibiotics and had blood test they show nothing wrong. Is this all in my head I do not know where to turn now for help.
Hi. I have done many years of researching for my boyfriend. I have come across this post more than once and was hoping that you might be able to help us. We have been together for 13 year. He had a root canal in 2012 which ended up becoming an extraction. His jaw dislocated and he was unable to close his mouth without the help of the doctor and nurse. Ever since then he has had severe pain in his jaw. He describes it like being in a vice with major pressure. It is extremely weather-related now. If it’s going to storm it becomes very intense. His eye vibrates, he has ringing in his ear, shooting pains up into the top of his head and down into his neck. He is absolutely miserable and has seen several doctors and specialists with no diagnosis. He is at his Wit’s End and has resulted in only pain meds to manage the pain. He is also on antidepressants and it has changed him as a person. He does not want to live like this anymore. We live in Florida and I was wondering if you could recommend any doctors in the states that might be able to help. He has MRI results on disc
from the specialist he saw in Tampa. Thank you for taking the time to read this. We are absolutely desperate and lost.
Your best bet is to approach the Pankey Institute in Key Biscayne http://www.pankey.org/
They will have someone who can help your partner.
I came downn with trigeminal neuralgia type two from infected roit canal. 2as on heavy doses of all kinds of opioids including fentynal patches. And still had breakthrough pain. Pain was in face jaw gums eye roof of mouth and tongue. In my middle of the night searches I came across a device made in isreal called Nanovibronix. It changed my life. After 2 years of hell I’m now on 1 nueronton and 1 tegretol per day and I’m pretty much pain free. I was on 10 pills. I’m still working on reducing more. It works. In fact now I don’t even use it except once in awhile if pain starts to increase. This has permanent relief. Go to their website and read. Get it. Use it. You’ll have to work out your own routine with it. I couldn’t where it as often and I couldn’t where it on my trigger area. Good luck. And best wishes.
Cindy
Great article. Im not familiar with medical verbiage, are we to understand that this was not able to be seen on a traditional xray?
I have seen many cases where conventional x-rays look normal but we find problems on CBCT 3D views, yes.
Hi Andy, I would like to ask you a question about something that my dentist told me yesterday regarding a shade in th X-ray he took yesterday prior to the extraction of a troublesome tooth that happened yesterday. Before I ask you my question, I hope you don’t mind if I tell you a bit about what has been happening to me in the last couple of years.
I had a broken tooth, lower jaw, second front tooth on the right, when I was 11. We did nothing to the tooth until about 19 years ago I had a really bad abscess in that tooth and a root canal treatment was done. The dentist I had then told me that it had a bad prognosis as the root was hooked and he couldn’t reach all of it in the root canal. A few years later, I got another bad infection and they did another root canal treatment in the same tooth and had a crown put in.
Every now and then the tooth would get a bit infected and antibiotics would sort it out.
Suddenly and out of the blue, two years ago I had this really bad toothache and I went to the dentist who gave me antibiotics. The pain got much, much worse despite the antibiotics and the right part of my lower lip suddenly got numbed. The pain in the jaw was unbearable and it also went to my ear, cheek, nose etc. When I returned to the dentist and had X-ray, she saw a shadow so he referred me to hospital urgently as she thought it could be a tumour or a cyst. I begged for something for the pain as the pain in my face was unbearable and she suggested I saw my go for diazepam to be prescribed.
The pain was jabbing, burning, twisty, stabbing, electric, and as if I knife was twisting into my jaw and cheeckbone or being hit by a rock on my face. The pain was constant but with regular sudden attacks. I saw my gp that day who said he thought it was Trigeminal neuralgia and gave me carbamazepine. The pain got worse and the pills did nothing so I ended up in A&E where I was given morphine which did nothing and the maxilofacial Doctor did some nerve blocks so I could have a few hours relief, which I did. I spent a few days in hospital as neurologist suspected something worrying. I a had a lumbar puncture and an enhanced MRI of my brain. Both tests were normal. The maxilofacial specialist that I saw did a CT mandible scan which showed nothing, and he gave me lyrica as the cambamarzepine wasn’t working. Lyrica was a game changer. Initially I needed a high dose to stop the pain but in the last two years I could have a normal life as it kept the pain away. So I considered myself to be lucky to have a medication that allowed me to work and kept all/most of my pain away. The neurologist told me I had a dental neuropathy and the maxilofacial specialist told me it was Trigeminal neuralgia. However, he said that I should have that tooth taken out and have an implant by a good implantologist. I asked him if he reckoned my facial pain was due to that tooth, he said that I’d de better off having that tooth out as having regular infections there was no good. I’d didn’t do anything about that tooth as I had heard that implants can cause nerve damage and I didn’t want my facial pain to get any worse. The lyrica was working anyway.
However, a couple of weeks ago my pain returned out of the blue with a vengeance. I was in constant facial pain and I had about three attacks a day which went on non-stop for two to four hours at a a time with no let up or variation in intensity which I rated a 10, and then constant pain in between. The gp advised me to increase the lyrica from 50mg a day to at least 300mg little by little plus up to four amitriptiline a day. I suspected a tooth abscess in that troublesome tooth but couldn’t see a dentist for a few days. I started taking augmentine 500 three times a day, which I had at home. The pain was still bad and I saw another dentist who also gave me amoxicillin. As I was taking the amoxicillin and had upped the lyrica up to 300 the attacks stopped and the constant pain became more bearable and almost went away.
I forgot to say that had ended up in A&E asking for a maxilofacial doctor to give me another nerve block as I couldn’t cope anymore. Maxilofacial not in so I was given morphine, which for the first time I was surprised to see it worked as it doesnt usually work for TN. They also X rayed my mouth but didn’t see an abscess.
Days went on and with the amoxicillin that my new dentist had given me and the upped dosage of lyrica I started to feel better.
I saw that new dentist as he is a well reputed implantologist and he saw that I had an abscess in that same tooth, which they failed to spot in A&E X-ray. Yesterday, he took the tooth out, cleaned the bone and put a temporary bridge until in a few months I can have the implant. I had told him yesterday that I could feel something small, hard and very painful between my gum and my cheek on the side of the face where I have the TN (although I also have iTN in my left side as well, it has never been so painful as the right hand side). I could touch the same point on the outside of the pain and it would start TN pain. He felt the inside of my mouth for quite a while but told me he couldn’t see anything untoward. I had a whole mouth X-ray and this is where my question comes:
Dentist said he could see a shadow exactly in the same point where I said it was painful and where I could feel something. He told he it was a nerve that got out of my tooth and went into my lip. This makes sense to me as it it exactly the part of my lip that has been tingling/numbed for the last two years. My question to you, Andy, is if his explanation sounds plausible to you. He said that that is part of the Trigeminal nerve.
If his explanation is correct, is there any change the maxilofacial specialist can do something to that nerve so my TN goes away. Can this nerve be burnt off or would it cause my lip to curl down or get paralysed ?
I don’t want to be taking lyrica for the rest of my life in high quantities if the whole thing is a dental nerve problem that might have some solution.
Sorry about my long message and thanks in advance.
Monica
Hi Monica,
Yes, it’s quite possible the TN type pain could have been related to that chronically abscessed tooth in my experience. You should wait a while and see what happens now the source has been removed before doing anything else. Nerve ablation isn’t always the answer and although you shouldn’t get a droopy face (trigeminal (III) is sensory not motor, which is taken care of by the facial nerve (V)) it’s not nice having a numb lip/face either.
Good luck!
Regards, Andy
Hi Dr. Lane,
I was wondering if I could get your thoughts on my situation.
I had tooth #19 pulled and an implant with bone grafting done simultaneously the first week of May. This tooth had a root canal and endodontic microsurgery 9 years ago but had started bothering me in February and became acute right before it was pulled. Visited general dentist who started me on Amoxycillin and shaved down my crown to provide some relief before I could get the tooth pulled a few days later.
Oral surgeon (referred to by general dentist – both are extremely competent) said the tooth was sitting on an infected abscess based off the panoramic X-ray. He had no issues getting the tooth out/putting the implant in other than having to numb me extra because I was feeling pain midway through the procedure. Panoramic X-ray was taken immediately after and he proclaimed it beautiful.
Uneventful immediate recovery period, other than lots of bleeding (typical for me, had the same when wisdom teeth were pulled and when tooth #18 was pulled years ago). I was on Amoxycillin for an additional week after surgery. I’m a very healthy female in my 20s, no smoking or drinking ever, not overweight at all.
A few weeks after surgery, I began experiencing a new pain – more of like a general ache. Went back to oral surgeon, was put on a week of Augmentin. Didn’t seem to do much so went back to him again, was put on a week of Metronidazole at 500mg/4x day. Took about five days worth but the side effects were unbearable plus the pain seemed to actually get worse – my jaw felt very stiff/locked and the ache became an actual throbbing. So I stopped the metronidazole last night and visited the surgeon again today.
He examined me and another X-ray and said everything looks incredible. He says it could be just muscle spasms causing the pain and advised me to stay away from crunchy food and will see me again in 2 weeks.
I have kept my general dentist updated and he agreed with the surgeon’s course of action before today – after today’s visit with the surgeon, I left the General dentist a voicemail but didn’t hear anything back.
While I am of course willing to accept that the pain could be muscle-related, it seems to be something more to me. Does it make sense that I would have pretty steady throbbing just from that and pretty much only localized to the implant site and its immediate surroundings? Also, why didn’t I have the pain immediately following the surgery and why does it only seem to be getting worse?
Any thoughts would be ever so appreciated!
Hi, I’m sorry to hear about your problems. This doesn’t really sound like a muscle problem, I agree, but it would be relatively easy to check if your dentist were to use an anterior deprogrammer device like a Lucia Jig or NTI-tss.
I wonder if a CBCT 3D scan might give more information? What you describe could be related to some of the infection remaining within the bone following the extraction, but you’d think the antibiotics would have helped. I suspect it could be antibiotic resistant bacteria or a fungal infection. Either way, it sounds like you’re in good hands so please let them know that you’re still in pain.
Good luck!
Wow, thanks for the quick and direct response! Are those tools that my general dentist would have on hand? Or do I need to see some sort of specialist like a periodontist?
It’s just frustrating to me because the oral surgeon keeps saying eevythung looks so great with my implant and that he wishes all his patients’ implants looked like mine.
I did wonder when he first did the implant why he chose to do it immediately after extration when the whole reason for extraction was because of an abcess. Everything I later read online stated that it’s best to wait until the infection heals before placing the implant.
I asked my general dentist this and he said that the surgeon must have felt that he could easily clean out the infection.
At this point, I’m starting to feel like they think I’m the boy crying wolf! But I know in my heart that something is not right. This type of pain isn’t normal :(.
If it is a lingering infection, how would you choose to treat it? Another antibiotic (which one?), removing the implant? I want to take care of this sooner rather than later because I’m starting an intensive school program soon and can’t have this interfering anymore with my life as much as it has this past month.
Again, THANK you!
Hi Andy I am suffering from disc displacement after a dentist put very bad onlay on my back upper molar . I was suffering with so much facial pain and stiffness and difficulty to open my mouth . But they were insisting that it was all in head even though I got second opinion from another dentist and he confirmed that zicornia onlay was high in medial and papal side . Anyway after got ignored my symptom got worse and I was looking for help . I went to another dentist they gave me partial splint which didn’t cover my back molar and they told me wear it every night and they adjust the onlay . My facial pain reduce abit but facial stiffness and difficulty in mouth opening still remained . But after couple of months I developed abit of interference in back molars . I told them is it because of partial splint , but they denied it . After 6 months of wearing that splint I started develop lots of click and noise and pain in my tmj , once again I approached them and explained that my only teeth that is touching when I remove the splint , is my back molars and I couldn’t put my teeth together . I developed severe bite problem . They said I should go and have MRI to see if I have disc displacement , which I did . Then still encourage me to carry on wearing partial splint and they ignored over eruption of back molars . Then I cried my eyes out and my condition getting worse and gp send me to maxofacial which completely ignored my interference in back molar and said click without pain doesn’t need any treatment and put me on amitriptyline . I took them for 2 months but did nothing for my pain and problem with my occlusion . Then I went to dental hospital and I am wearing Michigan splint for almost 8 months and the consultant every six weeks adjusting my back molars and shaving them but the pain has reduced but still after so much adjustment in my back molars still I have interference . He adjust the teeth very little at the time and I am having difficulty to put with this imbalance in my mouth for so long till next visit . Consultant believe that my problem was over eruption of back molars but still I have some noise in my right tmj even when I swallow or move my head . And I have dull ache in my ear and different noise in my ears time to time . I am so scared my Bach molars have no cusps and shave down so much which they are so sensetive and after 8 months of wearing stabilisation splint and teeth adjustment still I have interference in back molar and I have to wait 2 months for the next visit . I am so worried and helpless
Hi Akram,
It sounds like you may have a clenching habit that isn’t being addressed by the current treatments. Whereabouts are you located??
Best regards, Andy
IM going through the same since 2010 my story is that no listen or believes till its top late they do all the tests but seem to have their opinion my life in s hell and can’t sleep eat or go far spent private docs good but care after rubbing sh they give so may names I lost time friends family and my health as no one listens in beginh its hell dont know what a good meal is…hurts chewing talking and can’t breath in nose jaw hurts told have tmjd and tn my story too long too put on hear a polish dentist did this too me and lied
Hi I a have suffered with various chrinic symptoms for 35yrs I had 2 extractions done by dentist last wednesday I am now in excruciating oain in tooth next to extraction which has root filling and pounding headaches,chrinic sinus pain from tooth up to cheek to between eyes and ears are painful with extreme pressure .I know its the root filling I can’t get dentists to take it out plus other two root fillings as they are not showing up in x-rays. I’m worn out I wish there was someone to help me I can’t bear it anymore I feel so alone and no one is listening I have no money so I cant even look for a holistic dentist I don’t think my body can take much more ,please could you help me I want my life back I’m desperate.
Kind regards Lynda
Please let me know where you are Lynda and I will see if I can find someone to help.
Best regards, Andy
Thank you so much for your reply . I am living in london but I need help . I do have clenching problem because every time I want to close my mouth I have severe malocclusion. One side on my jaw have very little contact and the other side still after so much adjustment still feel so high and interfere with my chewing . I am dealing with this problem and not having proper bite almost 2 years . I am now so depressed that taking antidepressant . But hasn’t help me at all . My face is so tired . Every time I remove the stabilisation splint all misalignment of my occlusion is coming back . Please help me
Dr lane I also have developed slanted jaw . Every morning after removing Michigan splint I have slanted jaw . It’s extremely uncomfortable . It drive me mad not to be able close my mouth without so much discomfort please help me to have my life back . I can’t believe all this happened to me just by single poorly fitted onlay . Dr lane all my family is suffering because of me . I can’t concentrate in my daily duty . I have developed back pain as well . I feel so hopeless and I am afraid to choose the wrong person to treat me . I have seen so many professional still I am in so much mess . Help me please
Please contact me at andylanebds@gmail.com
How can I get in touch with dr. Andy lane….my mom has a similar story to this lady’s story. We haven’t gotten relief . And diagnosed with a lot and given a lot of become….where is de. Andy practicing….thank you
My mother had teeth implants done 8 years ago…ever since she has had problems like electric shock from her ear to her jaw..she feels burning in the gums…it’s very bad…all the dentist’s she went to said there is no problem with the implants. She asked to remove them but they said that is impossible and will cause more damage…finally one dentist said it was trigeminal neuralgia…she is taking medicine for that but there is little relief and feels a lot of side effects with tegratol…could it be something else that the sea. Aren’t seeing….thanks a gain.
Please write to me at andylanebds@gmail.com
I am in Saddleworth, N W England, UK
Hi found this site..thought it was only me.
I have suifered since 2010 after A failed root canal then extraction..which I was told it would calm but became worse..my situation is complex due too not bn listen too by the dentist in the beging then left with constant antibiotics all time then told had tn and tmjd .now had another extraction in front cavity and noe can’t breath through nose ceek numb can’t eat its hell..all I learnt live with u name the meds i had them but my life has become hell I need help and I know what’s gone on and wrong but nobody listens ad I said I can’t put all my symptoms on here as would be a book.
PS I dont have nerve problem bn brushed off with but in end they agreed the condition is evil as the. Nerves and ligiaments are need the area a d sinus is that it affects all I need help I know its there but where? I have done lot research and dentist make errors they ruined my life (I’m open too any questions) at mo can’t eat talk or breath nose meds not helping just chilling me and my neck and gum line is terrible I choke in bed by cavity site Angela god bless all all can say dentist cover up things after six months if scanned it shows if left later it does not..lost friends family do t undetstand y quality if life is poor and it could help but for some reasons they dont listen and its not pytom pain or symptoms
Feb 25, 2015 I had the remainder of my upper teeth removed and now wear a denture. About three days after the extractions I started getting continual throbbing pain all through the right side of my jaw radiating into my ear my throat and my last tooth on the right side of my mouth. I have had and continue to experience a great amount of stress trying to “adapt” to the denture.. My self esteem is shoot and my husband doesn’t appear to have any “physical attraction” to me any more. I don’t wear the upper denture when I eat so my gums are getting quite the workout.
The pain in my jaw, my ear my throat and my last right tooth is getting worse not better and it appears to get even worse when I attempt to brush the last remaining 8 frontal teeth. I’m at my wits end. Not only do I feel ugly and unwanted because of the denture but I feel physically and emotionally “worn down” due to constant pain.
I feel like I’m done just done. There are so many other components to this story but I’ve appeared long winded enough.
Your thoughts?
I’m sorry to hear about your troubles Karen, it’s obviously having a very serious effect on your quality of life in many ways.
There will be an answer, but we need to find you someone who can help. May I ask where you are located in the world?
Email if you prefer: andylanebds@gmail.com
Best regards, Andy
I recently had a crown put on a tooth in the back on the lower left side of my mouth. Shortly after that I developed what I thought was the crown bothering me and the pain radiated up my neck to my ear to where I could barely touch my ear has now gone behind my ear and has radiated up the back of my head. Could this all be related to the crown or the nerve in that area?zmanr@twc.com
Most likely the crown is too “high” – you need to go back to the dentist as soon as possible for it to be checked and, if necessary, adjusted.
Omg I sinserely cried when I read this as I finally feel there may be hope. However, im not as good as writing as she was in explaining her story because of the continued pain I’m still going through. Her story as the struggle is described is a lot like mine but without Dr Andrew Lane and without an end in site. I do think my issue isn’t quite as bad but I’m feeling my life is over at times too. A quick review with hopes Dr Lane you could call and maybe get a better understanding and be able to give me a direction possibly? I would love to talk over the phone as I’m in so much pain I have a hard time even sitting to explain what all has happened. 918-378-3263
Kathern, would you please email me at andylanebds@gmail.com in the first instance, and let me know where you are located, your pain history, etc? Many thanks, Andy
Hello – ive been following this article and asked a questions a few months ago thanks so much for your reply. My questions today is do you ever know if your patients test positive for MARCONS in nasal cavity? My mom has veen undiagnosed for 4 + years and we have moth been exposed to mold. I was seen by a dr who specializes in biotoxin illness and have twsted poaitive for marcons. This as ive read can get into oral cavities, jaw bones and facial areas and is hard to kill. Could it be possible that MARCONS could cause a false TJ symptoms as well?
Hi Tonia,
MARCONS are thought to be resistant forms of the Staphylococcus bacteria and are commonly found in nasal passages. It’s a controversial area of research but I would agree, it’s something to take into consideration. Unfortunately, by definition, they are resistant to pretty much all standard antibiotics, so physical removal and using more traditional interventions are what we have left.
Hi just been reading this article. I too am suffering from severe nerve pain in my face after dentil work. My plan was to have my amalgam fillings changed to white ones for health benefits. After the first one was changed when the anaesthetic jag wore of my teeth on the left hand side of my face felt numb and my front tooth was tingling. I instantly thought they have hut a nerve a tried not to worry about it thinking it would eventually heal however two years later and after multi trips to the dentists doctors, scan, medication, physios I am no better in fact I have deteriorated. The pain radiates round the whole of the bottom of my jaw I have no feeling in my left teeth and the feeling comes and goes from my right teeth. The pain is in my tongue and down the back of the left hand side of my teeth making me feel like the left hand muscle of my swallow does not work correctly. This over everything is the scariest as I hate the swallowing feeling. I am currently waiting to see a neurologist but fear he will not be able to get to the route problem. I am only 35 and fear that this is now my future. I am a very strong minded and continue to work refusing to let it ruin my life however I find my self struggling to concentrate on a daily basis. Any advise would be greatly received. Andy are you in Britian I would be prepared to travel. Thanks
Yes Cheryl, in Saddleworth.
Visit http://www.apolloniahouse.com or email me with more info at andylanebds@gmail.com
Best regards, Andy
Hi folks!!
I had posted a few times before in the same horrific pain as the rest of you!!
I’m convinced I have NICO. No flare ups for a while, certain antibiotics seem to fix the horrific pain but only ones I was prescribed for a UTI, never the dental ones. No one seemed to believe this and put it down to coincidence.
What has been happening is the teeth on that side of my pain seem to be dying off 1 by 1. Very odd since I have no visible cavities and good hygiene.
Nothing ever shows on X-ray which is weirder but my eye tooth is bleeding around it and tastes really acrid.
Would NICO eventually cause the teeth on the affected side to become at risk??
If so no amount of root canals etc will stop this unless someone takes me seriously. Sadly after so much medication over the years my stomach is wrecked with gastritis but god if that pain ever came back I have no idea how I could try and contain it a little given I can’t take NSAIDS anymore!!
Thanks for advice!!
Kerry!!
Hi Dr. Andrew Lane,
I just read your post and I wish I would have read it earlier. I live in California USA. I would like to see a doctor like you. I’ve been suffering from facial pain and discomfort. I’ve had a gum graft to help with my pain but it made it worse. Ever since the gum graft I have a weird sensation where they took the gum from my palate. I had the gamma knife done which helped with the pain but I still have facial discomfort. I have a retreated root canal and two dental implants in the area. Also just found out that I have a polyp in my sinus adjacent to the dental implant. I was told that one of my implants is in the sinus and the other has no bone. I need help. I recognize that I live far from you. Do you know of a doctor in the USA that could help me? Or what kind of doctor that I should see? Any help would be appreciated. Hope to hear from you soon.
Hi Bianca, I’m sorry to hear of your problems. It sounds like you will need a skilled surgeon prepared to take on a complex case. I can ask around for you, but one of the only people I know doing this in the USA is Wes Shankland in Ohio. He may be able to help you find someone who could help. http://drshankland.com/
Best regards, Andy
Dear dr lane do you treat any open bite throughout the all arch of mouth except the last molar ? This is a severe malocclusion that make chewing so hard as only back molars are in contact all the time . I have already made an appointment to see you butt I am so worried and scared about this condition . My back molars has shaved so much already but the end result is no contact in any teeth but the back teeth . And as they shaved back teeth the bite become worse . Is there any hope .? I am fed up with splint therapy.
Orthodontics may be possible, we’ll have a look.
My name is arthur Lisi jr and I have been suffering with facial pain for 10 months now. Left side mostly. It is robbing me of my life with my family and children. Every day is just existings and not living.. I would topick your brain on my condition. I am feeling hopeless at the moment. I am on neurontin and lexipro and my nuero wants me switch to cymbalta
I have my panoramic x ray if that would help.
Thank You for this info.I live in Toronto,Canada.If you could suggest anyone like you,I would go.I have suffered brutally from atypical face pain for 2 years now,started after getting rear ended-not a bad accident-no head bumping.Just a sore back.Burt in the weeks that followed a mysterious earache and then burning teeth pain.No on suspected the accident.Fillings done-and then teeth pulled.Pain is surreal.So much codeine and gabapentin ,baclofen and medical marijuana.But no diagnosis.
Thank you for your care and compassion.You bring me hope.
this woman’s story isn’t identical, but similar enough to mine that I would love to meet this doctor.
You can to me at andylanebds@gmail.com
Hello, Andy. You might have some information about facial pain and perhaps you could help me.
I’ll start by mentioning I am diagnosed with TMJ for 4 years now.
I’ll also add a note, in 2009 I fainted and fell on my chin, I believe this resulted in a trauma that caused my TMJ partly.
Now, 11 months ago, I was experiencing a terrible panic attack. As I also suffer from tinnitus by the TMJ, I tend to “relieve” the panic and ‘cut down noise’ by shutting my ears tight, by pressing them very hard on the part very close to where I suppose my nerves are, or perhaps, my jaw joint. I really don’t know, but I think my TMJ was flared at the time. I think my jaw was a little clenched at that moment, too.
At that moment, I felt a jolt of pain alike to a lightning across my cheek that left me paralyzed and had me cupping my face for a few long deliberating seconds until it “disappeared”. I could swear I felt the lightning “sending roots” down to my cheek and the rest of my face.
Since then, I’m experiencing aching dull pain in that side of my face constantly, daily, that is unclear to me whether it’s TMJ or something else since it’s mostly located around my joint and muscle areas, but also sometimes around my upper lip and cheek. Sometimes I experience migraines. It’s very hard for me to localize the pain, it changes often, from primarily the jaw joints and the masseters muscles to my cheekbone and downwards, to the bottom chin and slightly closer to the side of my upper lips.
I did not experience any more lightning attacks or stabbing feeling since! Sometimes I have sharp jabbing in my ear, though on the other side (I assume that’s also related to TMJ). I do feel muscle spasms sometimes and slight sensitivity in my gums/teeth, though rarely.
Also, touching/brushing/temperature etc does not trigger pain.
I have not tried a mouth guard, though I noticed that during this time the constant pain had gone slightly down. I even had a whole month where I did not experience the constant ache anymore, however lately the dull ache returned, but again, not quite as painful as it was 11 months ago.
At first, I went to the TMJ clinic and they gave me ibuprofen 400 mg 3 times a day for 9 days and it did nothing.
I went to my doctor and they said the description matched TN, but it’s not quite pathological to assume I have TN based on my story.
I simply do not know what to do. I’m 22 old girl. I’m very scared of ‘giving myself TN’.
Now, my question is:
Could there be a chance the joint was inflamed and therefore caused this shock-like pain in my face when I pressed my ears?
Is it plausible for the joint/bone to press against the nerve/irritate it to give such type of pain? Would a mouthguard help?
I would appreciate any type of help IMMENSELY. Thank you VERY VERY MUCH!!!
This does sound like TMD. A soft mouth guard is not really recommended any more as we think it tends to make some people worse and actively encourages clenching and bruxism.
The best ways to control bruxism and clenching are Cerezen (an in-ear device that you can wear virtually 24/7, or the NTI-tss (aka SCi or Sleep Clench Inhibitor) – you need to find someone locally who can provide these.
Good luck!
Best regards, Andy
I was sick for five long years it was very hard journey. This top chronic illness expert stated, that 70% of all illness are dental related . Mayo stated 88% of initial diagnosis are incorrect A well known surgeon told me that 50% of surgeries they do there are fixing other doctors botched surgeries i figured out the biggest problem with this sort of medical problem is the testing method is not advanced enough . I could write a very, long sad story… sure to make you cry, But I will keep it short I saw about 100 doctors because hidden infection was creating many symptoms .I was told that an infection has to be at a certain percent for it to be seen on an x-ray I also noticed that three dentist I worked with had different opinions . I saw three dentist one said “I had a fractured at the root of the tooth and will fall out eventually” the other dentist would said “let’s use ozone to try to save it” Another dentist said ‘that needs to be pulled because the tooth is harboring infection.” . On vacation at the condo I did sauna everyday suddenly major tooth pain l Heat makes infection rise to the surface. That tooth extracted. I was still not well ! I had CAT Scans, head MRI’s high resolution CAT scan panoramic in fact I was doing things to counteract the effects of all these scans.i had dental cavitation surgery three times I was better, but not perfect I knew something was making me sick Finally, one day I had a tooth aching wasn’t sure which one so dentist goes let’s do a VITALITY test …they send electricity through the tooth to see if the tooth is alive or dead.. One tooth was death and the one next to hurt so bad too, but he extracted the dead one and there was big bag infection right into the bone. Here was a clue a couple years earlier my dentist noticed cementum growth on same side of upper molars were infected , which is rare I think a wall was created by the body in order to deal with this hidden infection it is the body intelligence to encapsulate. Now I have the tooth next to it hurts so bad when you push on it so it was a double infection into the sinuses!
I read that story about Van dyke his doctor said that him having titanium ( meta) in his mouth was like a thunderbolt going through his head I guess metal fillings mixed with saliva have an electrical charge so it is like having a battery in your mouth.
I read that today many patient no longer want metal fillings because of the risks they are they are having all the metal removed and replaced with zirconium that is porcelain non- reactive
This is a test my doctor recommended that I did not have a chance to take .In nuclear medicine they had a test where they take your blood and then spin the white blood cells with a tracer and then they put the blood back into your body and follow the tracers to the site of the infection because that is where WBC congregate ! Now I should of been told about that test 5 years ago right ? The other is a new type of PET scan that is supposed to be able to nail hidden infections I’m writing this just in case the nerve pain is actually being triggered by something else that your doctor has not thought of . I hope this information is helpful to someone
I need your help. I’ve had 2 Lefortes split osteomies. The last surgery was in 2006 and I had chronic facial pain that was manageable until this Christmas 2017. Suddenly had gum pain so oral surgeon pulled out what he said was infected right upper molar #2. Then had cavity in right upper 5 tooth filled pain got worse but not teeth gums upper right radiating in sinus and eye area. So within three weeks I fin right upper 4th tooth temporary still on because so inflamed. Hydrodine I am taking along with Neurontin and Motrin to kill pain. Now this morning pain a little better right upper side of gums and new pain left upper fat back gum area where I can feel one of the old surgical implants. Thought it was sore throat untiunti I brushed teeth. I am on SSDI and there is no “dental coverage” but I feel this is more from the medical implants that were done. The drs think I’m crazy I can telll by the way they talk to me. It’s so depressing bec I was better and need to work. I’m desperate and if you could help me I would appreciate but I live in Florida and can’t afford a ticket. I was a patient of dr. Marks who was discharged abruptly in 2006 after becoming physically addicted to oxycodone. They just dumped me. My husband divorced me because I couldn’t bring in an income due to pain. I got better fought off the meds and had neck surgery, right shoulder surgergery after remarrying. He became ill and I had to care for him while recovering from surgery myself. Same scenario I ended up on SSDI and couldn’t generate an adequate income and my marriage ended. Pain in neck foot and shoulder improved to point of trying to get on my feet. I was so happy I took refresher courses which drained my income. Now I have this pain in the surgical areas and I feel like a science experiment. I don’t want or like narcotics. They only give you 10 at a time and they seem to help very little. I need resolution ASAP so I can work as a nurse. I can’t work if I can’t eat or sleep from this mouth pain. It makes no sense.
Hi Tammy, it sounds like the infection from the tooth that was extracted might still be present and may be trapped or draining into the tissue around your maxillary sinus – this is way more common in patients than most dentists and oral surgeons (and ENT) realise. You need to find someone who can have a look at what is happening and simply reopen the extraction site to clean the area and get a new clot to form. If this is done thoroughly the pain symptoms should change considerably and hopefully the clot will reorganise into bone. Leaving it where it is will potentially allow it to spread further into your maxilla, which isn’t a great idea 😦
Good luck! Best regards, Andy
Thank you I’m thinking the same. Three rounds antibiotics still present.
Hi I need to get some answers and hoping for help. I have been getting a red rash on neck and chest off and on that itches and feels hot like a sunburn for the last few months. Previous to that hives, then the pimply rash was near corners of my mouth and they hurt and itched a bit so the Dermatologist prescribed some Hydrocortisone cream. Then I had a rash that itched on the base of my skull, occipital area that caused thickening of the skin and again , saw the dermatologist who gave me Nother type of hydrocortisone cream. Now this small pimply rash spread to my eyelids, and outer corners of both eyes..I itch badly and have been to the ER for it thinking it’s scabies but they assured me it isn’t. I went to eye Dr and he foesnt seem to know what this is but I had been trying apple cider vinegar a and rinse to face and Triple antibiotic ointment along with small amount of hydrocortisone to get rid of this rash. It seems to help but only a little bit, but eye Dr said to continue this as long as it helps some. It’s a rash that hurts, tiny pink pimples that look like they have clear fluid in them. They keep coming back. They called it Risacea, but I’ve had that before and it’s definitely not the same type of rash. Now I started to get pain in my side of face, sharp trigeminel like nerve pain, went to my dentist who x rayed an root canal that I had done about 4-5 yrs ago. He said there is some darkening near the root and jaw and has put me on Penicillin Pen VK and then said I need the root canal tooth out. It’s tooth number 30. When I had the root canal done it never felt right and the oral Dr that did the root canal wanted top put me on 3 different antibiotics at one time which I had only taken one because I know it’s not good to take all that at one time.. so now I’m worried, it’s a regular dentist that will be pulling this old root canal tooth and I’m still getting eyelid and face rashes, the nerve pain has gone down with the antibiotic so far, but the skin rash continues, and I’m very scared to have this done and wonder if I need a periodontist to do this? Do you think these raises are from the root canal? Will I wind up with trigeminal nerve pain after it’s extracted? Help please, I have been feeling very run down as if I’m fighting an infection, bad headaches that come out of nowhere like someone taking a baseball bat to the back of my head at times, eyes hurt and burn and itch more now, photosensitive to light too at times.. I have chest discomfort and palpitations that feel like my heart goes into abnormally slow rhythm, and skipped beats, and I am bradycardia. I am very anxious now as to what to do and I know I can’t tolerate all the pain that may occur if I get this root canal tooth out, however might it relieve all these symptoms?? I’m very sensitive to any drugs too, please advise? Do you think these rashes are from teeth gone bad? I haven’t had a full mouth x ray but think that I should get all my molars and root canals out..what do you think?
Hi Deborah, of course I can’t possibly comment on your individual case without examining you and seeing a radiograph, but as a general rule if you have those symptoms and feel they might be related to a known failed root filling I’d be more inclined to opt for extraction and very thorough debridement of the socket. Re-root filling teeth is known to be less likely to be successful than doing it the first time, but if you’re determined to try that first I would recommend seeing a specialist Endodontist. Good luck!
I am not a doctor or dentist so not able to comment on any case but just share a little of my journey.
I also have some of the symptoms described, neuro, eye pains and shocking upper body pains.
I am grateful and thankful to you Andy for your help through extractions and other work in recent years.
I am also medication sensitive and antibiotics hit hard, being diagnosed with other insect related infections in the past -Lyme disease, from what I read triple antibiotics can be very relevant even though they cause major herx and when on antibiotics they helped with my long term pains due to dental infections while taking them.
My pains levels can still be high and my symptoms complex are still serious but not as extreme as they had been for many year’s, some years at suicidal level, hope overtime things will settle and more problems resolved.
Good luck with your dental treatment and hope you find solutions
Hello Andy, I live outside Britain but very much appreciate this site of yours as a possibility to discuss these difficult to grasp dental issues with an expert so very much empathetic as yourself. Thank you! May I ask one (maybe rather particular) question regarding my CT report. In it it’s said that I have a “jaw bone defect with perforation of the buccal cortical plate”. Now, one local surgeon (although convinced of the existence of NICO in my case) claimed that this was not a relevant finding while, on the other hand, one colleague of mine who suffered from NICO for more than 10 years (and almost died of it!) told me that in his case this was a c e n t r a l disease causing aspect. Don’t know whom to believe. Can you help?
Thanks for your comment Marc. The problem with the CBCT of course is that you only get limited information from them, and only about the hard tissues generally, so they must be viewed in combination with a clinical examination, possibly including biopsy and/or MRI, before you can make a definitive diagnosis.
I have a condition that has a lot of similarities to this.. my chiropractor found a bony lesion on the bottom of my jaw that has been overlooked by everyone.. if I could send some copies of my X-rays any help would be greatly appreciated
Hi there, my name is nehal
I went to my dentist today for a root canal and a crown, during my visit there my doctor started blowing air inside my teeth but he actually kept blowing air for a long time…i fet my left side of my face inflammed. When i went home i started feeling a weird feeling in my face as if the air slipped inside, whener i press my left face side i hear sound like air inside my face..I don’t know what this is, this has never happened to me before..please advice
Nebal, it sounds like you have an air embolus. This might resolve on its own but could be very dangerous, so please seek professional help immediately.
Idk if this applies to me or not?
I had a bad tooth extraction, dentist tried removing it and had missed with the needle so I felt everything.
I stopped him mid way as I felt a little sick from the pain.
He freaked and wanted to send me away with a tooth partially out.
I said no lets finish it, he numbed me properly this time with 9 needles and said we can’t pull it we have to smash it out.
I said its moved I know it has I can feel it, no he said we are smasking it out.
He nervously broke my tooth into pieces and removed the shards, by cutting my gum, 3.5 hrs later It was done.
I didn’t feel right and was back in two days for him to proceed again, and the next day, next week.
Finally another dentist to fix it up.
12 months later I got TN on same side, related? Not sure really wish I knew.
I do get jaw pain as apart of my TN when its really severe.
Who knows?
Yes, sounds like it must be connected. You may need to get a 3D scan (CBCT) to identify any locked in infection. Good luck!
Hello Andy.. I have been suffering from left sided facial pain for 2 yrs around a root canal I have had 5 years ago.. I am looking for insight and would like to send you my radiographs to see if you can see what others have failed to see.. i am going to a biological dentist to have my root canals removed as they have been nothing but trouble.. you help would be greatly appreciated
Of course. Please send to andylanebds@gmail.com
Best regards, Andy
Hi my name is Angela. Trust you are well .having read your story I have been same as you since 2010, my life is isolation and family breakup it’d terrible no one believes you, now its 20199/ I have becr worse meds after meds I contactef any.hr offered help waiting too hear back
Tc heather angels my email sf is whitemail770@gmail.com
I suffer for 13 years a chronic teeth and jaw pain that started rigrt away after dental treatment (filling), how can I reach Dr Andy to look at my case???
the pain is constant burn nd tingling
andylanebds@gmail.com
http://www.apolloniahouse.com
Hello Andy.. I live in the us.. and have been living in pain For the last 3 years.. could you refer anyone in the Washington DC area who could help me .. nuerontin helped for about 6 months..that stopped working and I’ve been off meds for the last years.. looking for options..I had an infection on my left side of my jaw that was cut out of my face following extensive dental work.. any help would be a god send..
I have the same thing going on been going threw this for 10 years and still cannot get help., been back and forth to hospitals., specialist for years., am hopeless no-one doctors get how escreatiating the pain and think I’m only going to hospitals to get free pain meds., I’m suffering and cannot even hold up for 5-10 minutes a day without needing to lie down., live in Canada health system is not very good., don’t trust doctors anymore. and just have no-where to turn lost basically everything I had in life. and honestly don’tknow how much more time I have.
Andy, I’m a 25 year old female, and have been suffering from whats been called “Atypical facial pain” for almost 2 years now. In 2010 I had a botched wisdom teeth removal, involving all four teeth. I had bad dry socket in both lower teeth. The pain I’ve been experiencing started out with an odd fluttering/zinging feeling in my lower back teeth on the left side. This odd sensation came and went, and after a couple months turned into a more constant dull, boring, deep ache in my jaw area. The pain is best in the morning, and for most the day it will be around a 4 out of 10 on pain scale. Sometimes reaching a 6-7. The pain can radiate up into my temple on same side, and occasionally I’ll get very slight zings in any of my teeth. The pain also will radiate down into my occipital area, and sometimes will ache slightly on the right side as well, but its 90% always on the left side. No trouble sleeping, gabapentin helped but seized due to side effects. I have experienced “remissions” where ive been in almost no pain lasting for a week, up to a month. But the pain always returns. Scans are “clear” had cone-beam done, no Tmj issues. I’m desperate, I’m such a happy person and this issue has completely broken me down. Could this be a possible cavitation?? I will take any help or advice I can get! xxx (Im in California)
Hi Paige,
I’m sorry to hear that you’re going through this, it’s such a debilitating problem. You sound like a really typical cavitation case to me.
I don’t know anyone in Ca that is well versed in these issues but if you contact my colleague Dr Wesley Shankland in Ohio http://www.drshankland.com he will be able to help, I’m sure.
Good luck Paige, I’m sorry I can’t be more helpful. Keep safe.
Best regards, Andy
Hello Andy. I hope you are well. Thank you very much for this article, I find it so helpful.
I was wondering whether it is possible to have cavitation that may not necessarily appear on the x ray either panoramic or 3D? I’ve been having bad eustachian tube dysfunction for several years now. It basically ‘clicks’, making audible sound and pops so often that I constantly hear my internal sounds. I had one root canal I had extracted 2 months ago after starting treatment for my hypothyroid condition. While learning about dental health and overall wellbeing connection has been a great learning experience and I feel I’m slowly getting better, this eustachian tube issue on my right ear is still the same and now I’m trying to see if it’s possible that the 2 wisdom teeth extracted from both upper and lower right side about 10 years ago could be contributing to this…if in fact they left some cavitation to happen. Visits to ent found nothing…
I’d much appreciate your reply. Thank you for this article and I wish everyone good health!
Hey Carol, going through the exact same story :-(( Also on right side only. For eight years now, noone sees anything. I doubt that the extractions as such are necessarily the triggering issue. From what I hear and read local infections adjacent to any (!) tooth can be very small, therefore hard to detect. Also a chronic low grade infection inside a tooth is often not suspected especially with molar teeth. I also strongly suspect a hypothyroid condition in my case. Nothing my MD was interested to investigate further though … I wonder if Andy has ever considered infrared thermography as a diagnostic tool? Lilian and Graeme Munro-Hall used to work with it …
I m getting worse doctors at wrexham not got clue and block me from going anywhere else spend pounds they not heard of condtion and think its just pain
Hi Marco. Are diagnosed as hypothyroid? My TSH is 3.5 and although it’s still within reference range in conventional medicine, the number isn’t ideal and I’m someone who functional practitioner calls subclinical hypothyroid. I must’ve had this ongoing for many years because I display lot of other symptoms like hair loss cold intolerance…etc which I had for like so long. I started getting consults from functional medicine practitioner as my GP won’t do anything. I also have a lot of GI issues which now i think could’ve been affected by poor thyroid function. I have awful reflux, not typical heartburn but more like LPR reflux. I can feel the reflux coming up all the way to my right ear from time to time and i think this contributed to my ETD. Do you have any reflux symptoms? I’m trying to target this from many different perspective as I believe there could be different contributing factors. God no one knows how awful this condition is….
Does your ear click a lot? Mine is just constant….all day. And I don’t know why but it’s not a tiny clicking sound that only I can hear, my right ear actually clicks loud that others can hear it too.
@Carol: sounds all very familiar! Yes, I have had (silent?) reflux too, less so recently. Planning detox protocol. Might all be a Biofilm issue. Has anyone heard of Dr. Paul Anderson?
Dr. Lane,
This could be my story. My nightmare has been 11 1/2 years long. Her pain breaks my heart. The only thing worse for me has been the length of time, and the number of doctors I’ve seen. I know that feeling of not being listened to, or maybe seeing doctors that didn’t care. I think the term atypical facial pain throws some doctors off. As if it’s not the REAL TN.
A dentist told me once that I would not be able to find a a dentist to investigate NICO because it is so hard to treat. Almost humorous if I felt like laughing since he was describing himself too!
Just one week ago I saw a pain specialist that I had seen before. This time I couldn’t stop crying. I don’t know if that helped. A little humor. It wasn’t intentional. He has also been working with his first trigeminal neuralgia patient. I couldn’t understand why the neurosurgeons or pain specialists I had seen had not giving me a TN nerve block. HE DID last Thursday. I am not pain-free but I haven’t cried for a week, I have resumed responsibilities I had to give up, and I’m enjoying life.
The pain that remains is mostly in my jaw and ear and radiates through my gums. I’m at a loss in finding a dentist who would go the extra step and investigate for cavitation. Oh. Btw. Even though I was told it wouldn’t help I had all my teeth pulled. It’s hard to convince someone whose teeth are pounding constantly that it’s not the teeth causing it. It was worth any chance that it might help. Even a little.
If you know of any dentist who would investigate the possibility of NICO, I would appreciate his name. I’m from Columbia MO.
Thank you for helping this young lady. It’s not an exaggeration to say you may have saved her life. I know the gratitude that she is feeling for you because I am experiencing that myself. I try not to live in fear that it will come back because I know I have someone in my corner who has the experience and the empathy to listen. I even have hope that there will be even more pain relief. So thank you for being a true helper for someone with this horrible condition.
Oh Mary Jo, I’m so sorry to hear about the way your pain has been dismissed and ignored by so many, what a terrible thing to have to bear. You should seek out my colleague Dr Wesley Shankland who taught me so much about cavitations. http://www.drshankland.com
Hi sorry too hear your issues, I myself have suffered since 2010 after root canal mess, since then I have had most my teeth out however the pain and sinus issues have reflected on my health here in uk there’s is very few who understand belive they just call it tmjd and tn then change their minds it just a circle has your b12 gone low as this what occurs as you can’t eat properly due too condtion or sleep check b12 abd infections of ear sinus that this condtion causes inflamation in the respority track
I have had pain for five years. I had tooth number five extracted which the numbness from the injections worked all the way to my tongue,cheek and chin on that side. Dentist could not explain why but in two months the numbness turned into pain and burning that is near unbearable because it never stops. Nobody has answers how to stop the burning even in my tongue. It’s an every day torment. Just the pain in my side of the tongue would give me better quality of life. Can the nerve going to the side of the tongue not be cut?
Hi Myava, how awful, may I ask where you are based?
I have the same problem
Hi there.
I am a 28 YO male based in Australia. 3 months ago, I had my bottom left wisdom tooth removed in the chair by a normal dentist. The tooth was sideways and the surgery was very rough. About a week I started to develop bad headaches and to the point where I couldn’t walk or move. They slowly subsided over about a month and I was left with ear pain and some mild tingling on the opposite side of my face. 6 Weeks ago i went in for a deep filling on the molar next to the wisdom tooth that was extracted. Since then, i’ve had serious headaches and nerve sensation all over my face that is starting to get more and more painful.
I have had an MRI which came up clean, and an OPG which came up clean. I saw a dentist recently who said that the gum bed next to the tooth is very shallow and may cause some sensitivity. The whole area is very sore and it feels like my whole left face is being ripped and tingling across my jaw, both cheeks and intermittent electrical shocks across my entire face.
I was wondering what you suggest I do in terms of next steps. I have a neurologist booked in for 4 months.
The sensation is my face is getting worse, I have a weird metallic taste coming from the gum bed where the tooth was extracted and that whole area is very sore and feeling numb.
Hi Matt, thanks for reaching out. It definitely sounds like a chronic jaw infection in the extraction site, but needs diagnosing by someone who knows about these things. If you’re anywhere near Sydney I’d suggest looking up Dr Ron Erlich or Dr Steve Tracy. The treatment is fairly straightforward as the extraction site basically needs opening up again to allow proper healing. Good luck!
Dear mr lane
I would like to pick your brain..I have been suffering from constant facial pain for the last 3 yrs.. it’s non stop.. I have seen a dentist that has done an ultrasound that shows areas of cavitation in all 4 wisdom tooth extraction sites..he has said they are grade 3 on the right and grade 2 on the left.. the lower left bothering me the most.. I am missing all my morals except the upper left.. I am scared to have the areas tampered with as I have terrible burning tmj and niuerologist have said I could make it worse.. but all the drugs do is let me sleep some but nothing really for the pain.. I know we have no crystal balls but reading thru this blog I value your expertise.. what are your thoughts on how I should proceed with this
Thanks you kindly
Arthur
It sounds like you have found the right dentist for the job, very few have a Cavitat machine. Try with a minor debridement of the worst area and see what effect it has, then if it’s helping you’ll have the confidence to be more aggressive. Good luck, and please report back. Best, Andy
Hi Dr. Lane
I appreciate how you seem to listen to your patients before actually coming to a conclusion. This is very difficult to come across.
So I’m willing to share my story in the hope that you have some advice for me. I have been suffering from facial pain on my left side for over 4 years. I think it actually started a couple of years before that, on and off, whilst I was having orthodontics treatment (braces). In 2009 I decided to have my teeth fixed. They were all over the place but treatment was not available when I was a teenager. So, I went to this well renowned orthodontist in Malta to finally have them fixed. For him to even start they had to remove 5 molars + 2 molars that I had removed previously. My canine teeth were high up in my gums and they had to be drawn down quite a bit! I spent 4 and a half years in braces until I actually had enough…they were still not perfect then, but I decided they were good enough and wanted to have the braces removed. During the treatment, I used to have excruciating pain in my left upper canine, but I thought that was normal and was told to take paracetamol for the pain. The pain never really relieved and when they gave me the retainer, I couldn’t take it because the pain was excruciating. I took my braces off in 2014.
Now bear with me as my medical history becomes a bit more complicated. In 2013 I gave birth to my son at the age of 43. At that time I was maybe taking paracetamol once a day because I had these stabbing pains in my head and gums on a regular basis. In 2018, they discovered two moles in my back that turned out to be melanoma, they took those out in time and it should be fine. But they decided to do a PET scan which showed that I might have thyroid cancer as well. So 2019 was spent carrying out a number of FNAs (biopsies) of my thyroid…I had 3, and in the end the result was positive, so I had a complete thyroidectomy in January 2020. In the meantime I was complaining about facial pain on my left side, but ENT doctors were telling me that this pain was due to stress and that I should go on holiday and drink some wine to relax! I guess they were literally mocking me and dismissing me at the same time.
My facial pain became worse. At this time I was taking paracetamol 24 hrs a day every day, but doctors kept saying that if my pain went away with paracetamol, it was nothing serious. To try and get a diagnosis, I went to 3 different dental clinics, ENT specialist, a neurologist, and also a rheumatologist just in case. Dental took a number of CT scans and decided there was nothing, the neurologist took a head tissue MRI, and saw nothing, the ENT pre-operation took a neck MRI and there was nothing, the rheumatologist was worried and took another head and neck MRI, and nothing came out of it. The ENT and Rheumatologist dismissed me, and the neurologist sent me to the Pain Clinic. The Pain Clinic sent me for a different MRI. According to the Pain Clinic specialist I had trigeminal neuralgia as when she visited me I was in pain with tearing, swollen and drooping eyes. The result of the MRI indicated “a vascular structure contacts the superior aspect of the left trigeminal nerve at the root entry zone. This is felt to be venous in nature (no corresponding MRI is available for comparison)”. In parallel I had a neck X-Ray which indicated that I had very severe osteoarthritis. Following that I went to an orthopedic surgeon who suggested that the vascular contact with the trigeminal nerve could be the cause of my facial pain. However, my neurologist believes that my facial pain is muscular related and a response to my over-use of painkillers…by that time I was on ibuprofen prescripted by my GP. My neurologist has now instructed me to take away all painkillers and focus on posture. This is where I stand now…struggling with constant pain, with teary and swollen eyes and sharp pain in my upper left canine tooth, my left nose up to my left eyez.
However, I have a strong feeling that the facial pain is a result of my orthodontics work. True it has been exacerbated by the medical history I’ve gone through and I believe that although my neurologist is right in concluding that my condition is partly because of muscular tension headaches and medication over-use, I believe that damage was done to the trigeminal nerve following orthodontal treatment, where my left upper canine tooth was displaced to such an extent that my nerve is now damaged. I am not a doctor, I admit, but I really feel this has something to do with it. My preoccupation is that until my pain is correctly diagnosed, I cannot get the right treatment…and this does not only mean that I will never get better, but in these last couple of years, I’ve gone into depression and to be honest, my whole life is in disarray…not to mention my feelings of guilt (because if it’s something I’m bringing on due to stress then it’s my fault) and my feelings of giving up on ever knowing what is wrong. I’m now trying deep tissue massage and acupuncture.
I would greatly appreciate it if you could assess and let me know if there are any other tests I could do or treatments I could have so I can 1) get a final diagnosis, 2) move forward with treatment, and 3) relieve myself of the guilt that I could be the one creating this situation.
Please and thank you x
Hi Josie, thank you for sharing your experiences with us, I know there are many out there that have been through similar things.
Please email me ( andylanebds@gmail.com ) and we can discuss this further in private.
Best regards, Andy
I have been going through same exactly with sinus and weight loss all teeth taken out nobody listens saying its neuropathic? I feel its bone is infected my life is runnied since 210 now its 2202 now cant breath nose and pilled up, which they stopping meds that help me, as it horrific gone down too 6 stone all after a root canal that become infected my health in other areas has detorated
Hello there, does anyone here have experience with INFRARED THERMOGRAPY of the head and neck Region? Appears to be quite a revealing diagnostic tool..
Can you please tell me where you are located, Dr.Lane? I have had for 5 years pain that has been variously diagnosed as atypical trigeminal neuralgia and atypical facial pain. I have been through so much, including a recent peripheral neurectomy of the nasopalatine nerve to try to stop the pain that did not accomplish anything and living on 3 times a day clonezepam and Lyrica, that make my mind mush to the point of not being able to work or care for my child due either to the pain or side effects of the drugs. I have become hopeless but need to live for my daughter who herself is trying to finish college in MA with terrible Elhers Danlos Syndrome. My pain started with tingling in the roof of my mouth and infection of the area of the anterior maxillary six teeth due to open crown margins and violation of the biological width. As I went to try to get new crowns put on, the dentist who removed the crown said there was so much decay she had to grind what had been previously only minor reduced teeth (Lumineers) down to tiny nubs causing root canal. all that was done in the process caused everything got so much worse. I need help so badly, as I have reached the point where I have given up due to inability to resolve despite trying everything that’s been suggested. My deepest gratitude for your response.
I’m near Manchester, UK. http://www.apolloniahouse.com