I have found myself at a point where I should take some serious decisions and I would like to ask your advice because many of you are so much more knowledgable when it comes to TN than me.
I have ATN with pain located around two of my front teeth in my lower jaw. The pain doesn't move around my mouth, although I feel tension (for the lack of a better word) in the whole of my lower jaw. My ATN was, I believe, caused badly treated inflammation and the nerve was possibly mechanically damaged during the treatments that followed, but it's just my gut feeling. I was unsuccessfully tried on Neurontin, then I was put on Lyrica on which I currenly stay at the dosage of 75mg/day. Previously I had been on 150mg of Lyrica and it did help to keep the pain under control, but as I was starting to feel better and didn't like the side-effects I suggested to my neuro that I will try to decrease my dosage. It's been a week now and the pain is back in full force plus I get night sweats and vivid dreams every night and after a week I feel exhausted both physically and mentally.
Today I saw a doctor who treats my TMJ disorder. He suggested I saw a dental surgeon who would revise my lower jaw - this involves another surgery and I had already had three in the past year, with every surgery sending the pain deeper into the bone. I see this as a high risk, but he says it could actually help me if there is a local compression of the nerve.
My question now is:
Should I go for the dental surgery at the risk of my pain becoming worse?
Should I increase my dosage of Lyrica, put up with its side-effects, and just hope that "one day" I'll get better.
Should I contact another neurologist or dental surgeon for a second opinion (my current neuro shrugged her shoulders and said it's up to me and that she can't guess if I'd benefit from another surgery).
I know that in the end the choice is mine, but I wuold really appreciate any feedback from you.
1) No. Not yet. One risk of any oral/jaw surgery is permanent neuropathic pain. Since you're predisposed to neuropathic pain, you're just asking for trouble on an ELECTIVE surgery that you probably don't need. Unless there is undeniable evidence on an MRI or somehow demonstrated it is necessary, I don't think it's worth the risk. I've never heard of someone having a local nerve compression in their jaw, which upon release, cured/helped someone's facial pain. Though I do find the concept interesting.
2) Yes, you should go up on your meds and tolerate the side effects. Once you've gotten to a therapeutic dose, give it a month or two and see if your pain resides. If the pain resides, then obviously stay on the med. Unless a side effect is a health risk, you should deal with it for two reasons. The first reason, usually your body adjusts to the med over a couple of months, lessening the bad effects. The second reason, is that there is no side effect worse than the pain. You need to be realistic and accept the fact that the pain relief will come with a trade off, and that might be feeling tired, or feeling dumb. I assure you that feeling constant facial pain is much worse than any side effect. And with the Lyrica, 150mg/day is not a high dose.
2a) You do not just take it and hope "one day you'll get better." You deserve better than that. Once you have determined the Lyrica isn't working, you talk to your doctor, and then proceed. If the Lyrica is helping a bit but you still need more relief, you either up the dose, or add another med, depending on your doctor's advice. If the Lyrica isn't helping at all, you ask to titrate off the Lyrica and on to a new med. Based on your post here and your profile, I'd think you'd do well by adding Amitriptyline and working up to 100mg/day. (Though you might have to stop your current depression med) If you don't want to try that, there are several others. You just have to keep trying until you find the right med or combo of meds.
3) Yes, of course you're going to get a second opinion on a surgery that could possibly make your condition worse, and it's an ELECTIVE surgery that you're not sure you need. I might get three opinions depending on the knowledge and skill of the doctors.
Many thanks to you all, I have contacted Red and I'm also trying to find doctors to give me 2nd opinion. Looking at my x-ray, I can't see how they can possibly remove any "accessive material" from around my front teeth as there is hardly anything left of my teeth in the first place:(
I agree with crystalv. Go to tmj.org and review everything you can on that website about tmj disorders before you have any surgery. One of their mottos is "doing less is best." TMJ surgery was the cause of Tinkerbell's (member on this site) 24/7 burning cold pain, on a level no better than 6/10, in every tooth, all her gums, palate, lower lip and chin for more than the past three years.
75 and even 150 mg is quite a LOW dosage .. and some people see REAL relief only at 450 or 600 mg a day.
i know cause i've been on that med. and believe me - i know that it feel better to be without it.. but - i DID sleep better with it.. and did feel a bit bit better with it.
everyone is defferent - but as i said - 75/150 is quite a low dose.. .you should consider highering the dose .. considering "taking" the side effect. it's your call - to put the side effects against the pain resucing possibility.
about the surgery -
firsy i'd like to here more of it.
here - (in Israel) nobody even's consider a local sureury for ATN. "all" i was considerd is MVD which i'm not sure is right - cause i think the injury is in a local nerve. not near the brain.
can i ask - on what backround are they willing to operate you ? did they see soemthing in the scans ? i mean -in which point are they going to operate ? or are the just "going to open the jaw" and sees what happens... which seems wierd.
i know people here warn you of this procedure - and you yourseld said it failed it the past and worsened the situation - so it's a problem.
me, personally i must say the idea of looking locally on the nerves and trying to "fix" it - i like it (as far as one can "like" this kind of thing) - but ... if people with experience tell you the horrors it can make..
i'm sure and touch in the area will worsen the pain - at least for a period after the operation. but the question (to ask the doctors) is what the think of finding they didn't find the last time.
i DO , eventhough, think it's good you have doctors that are willing to try .. and not send you home telling you you have "neuropathic pain" and go and live with meds that doesn't really help - and they try really to fix it.
whater it's possible or not - i wish someone else here could give us the answer.
Thank you all so much for your opinions. I'm currently trying to find a neurologist who knows a bit about ATN and who'd be able to consider the problem in its complexity. Well, the thing is, on my x-ray the root canals of my teeth seem to be slightly overfilled, BUT, the pain had been there before the teeth were filled, only it wasn't so deep in the bone as it is now (following the overfill). The overfill was done on purpose; my dentist pushed a material called MTA - some sort of biological cement, I believe - through the root canals (which had their ends surgically removed), she said it helps the bone heal faster. The bone actually heals really slow, this may be due to my teeth moving continuously. So my job now is to find a neuro who'd consider all of these facts, and get them work in a team with an oral surgeon (as Red suggested and I think it's a very good idea). Meanwhile, I've upped my dosage of Lyrica again and I think my body likes it. As much as I hate to be dependent on the drugs and struggle with their side-effects, I must agree with crystalv that there is no side-effect worse that the pain...
I see what you mean, Cleo. Still, I don't want to make a snap decision; I feel there is a fine line between having this condition, being in pain, but still being able to do things, such as work full-time, or crossing that line to potential disability. If I can find a neurologist who had seen patients like me before, (s)he could possibly tell me what my chances of improvement are if I go for the surgery. The previous surgeries made things worse for me - of course neither me nor the surgeon knew that I had ATN then, that's why I hesite so much.
Take care,
Oldriska
Cleo said:
ATN means you have a trigeminal nerve disorder that is unknown. My trigeminal nerve damage is known to be lingual nerve related. the nerve pain (now) consists of constant jaw pressure. constant numbness in my tongue/jaw. occasional electric jolts with mild burning in my tongue. 10 years ago before having lingual nerve repair. it was all 24/7 WAY worse. I didn't have a neurologist holding my oral surgeons hand at any time, or vice versa. of course maybe neurologists in other countries are pulling teeth and the dentist is doing brain surgery?
again - i know people here warned you (any maybe correctly) from any surgical procedure) i know i would LOVE to find here a dental surgeon who was willing to TRY and find the cause and nerve. i also think something in my jaw mechnically moved and maybe that is pressering the nerve - and only this surgerry and not MVD (which i was offered) would fix the problem.
Also i wanted to say - i TOO have had a bit of OVERFILLING of the root canal .(And i'm not the only one).
It's so wired we all have that.
BUT -
my pain started before this root canal filling , like your - so it can't explain it. also doctors told me my filling was a bit "long" inside jaw - but ALL doctors said it can't be the cause of the pain.
but again - what do they know.
for them - my all case is unique and some told me "we have never heard such a case before" -
well, maybe i should refer them to this site or to basic literature.
AND please REPORT agter your appointemnt with the surgery.
Oldriska said:
Thank you all so much for your opinions. I'm currently trying to find a neurologist who knows a bit about ATN and who'd be able to consider the problem in its complexity. Well, the thing is, on my x-ray the root canals of my teeth seem to be slightly overfilled, BUT, the pain had been there before the teeth were filled, only it wasn't so deep in the bone as it is now (following the overfill). The overfill was done on purpose; my dentist pushed a material called MTA - some sort of biological cement, I believe - through the root canals (which had their ends surgically removed), she said it helps the bone heal faster. The bone actually heals really slow, this may be due to my teeth moving continuously. So my job now is to find a neuro who'd consider all of these facts, and get them work in a team with an oral surgeon (as Red suggested and I think it's a very good idea). Meanwhile, I've upped my dosage of Lyrica again and I think my body likes it. As much as I hate to be dependent on the drugs and struggle with their side-effects, I must agree with crystalv that there is no side-effect worse that the pain...
My last news is that I have been referred by my immunologist (surprisingly!) to the Institute of Experimental and Clinical Stomatology of the Charles University. She said she felt that enough had been done in my case and referred me on the background of possible alergic reaction to the filling in my teeth (I'm almost sure I don't have alergic reaction to that, but I'm happy that someone cares nonetheless:)) Anyway, I'll let you know what they think.
Oldriska
Nir Morita said:
again - i know people here warned you (any maybe correctly) from any surgical procedure) i know i would LOVE to find here a dental surgeon who was willing to TRY and find the cause and nerve. i also think something in my jaw mechnically moved and maybe that is pressering the nerve - and only this surgerry and not MVD (which i was offered) would fix the problem.
Also i wanted to say - i TOO have had a bit of OVERFILLING of the root canal .(And i'm not the only one).
It's so wired we all have that.
BUT -
my pain started before this root canal filling , like your - so it can't explain it. also doctors told me my filling was a bit "long" inside jaw - but ALL doctors said it can't be the cause of the pain.
but again - what do they know.
for them - my all case is unique and some told me "we have never heard such a case before" -
well, maybe i should refer them to this site or to basic literature.
AND please REPORT agter your appointemnt with the surgery.
Oldriska said:
Thank you all so much for your opinions. I'm currently trying to find a neurologist who knows a bit about ATN and who'd be able to consider the problem in its complexity. Well, the thing is, on my x-ray the root canals of my teeth seem to be slightly overfilled, BUT, the pain had been there before the teeth were filled, only it wasn't so deep in the bone as it is now (following the overfill). The overfill was done on purpose; my dentist pushed a material called MTA - some sort of biological cement, I believe - through the root canals (which had their ends surgically removed), she said it helps the bone heal faster. The bone actually heals really slow, this may be due to my teeth moving continuously. So my job now is to find a neuro who'd consider all of these facts, and get them work in a team with an oral surgeon (as Red suggested and I think it's a very good idea). Meanwhile, I've upped my dosage of Lyrica again and I think my body likes it. As much as I hate to be dependent on the drugs and struggle with their side-effects, I must agree with crystalv that there is no side-effect worse that the pain...