(after i pulled two teeth last week.. and had a horrible week) -
I Was at a neurosureon today who specilizes in TN surgeries...
i didn't expect him to see somthing on the MRI.. since a neurosereon already saw the MRI and said it was fine.
to my surprise he said he DID see a blood vessel on the V nerve !.
he did recomend the surgery... but .. .also said my case isn't CALLSIC TN but more Trigeminal Neuropathy... (due to symptoms.. the constant pain... and the fact it started IMMEDIATLY after a dental procrdure)
so - even that he did offered to do the MVD...i myself not sure of it. cause another doctor there explained that (and i read that it's true) that many people have blood vessels comressed on the nerve for thier whole life but never experience pain. so what he saw on the MRI could be not explaining my pain .
now i'm confused.
what i'm sure (and he also said it) - that i should try TEGRETOL first - and if it helps it can clarify the diagnosis.
Most physicians would prefer medication over surgery, if the option is available. All surgery has some degree of risk in long term pain recurrence or other side effects of surgery itself. If you respond to Tegretol, Oxcarbamazepine, or Gabapentin, then that will tend to confirm a diagnosis of TN. And it may give you sufficient relief that surgery is no longer a pressing or immediate need. You can re-visit the issue later if your pain breaks through the meds.
i would do the surgery TODAY... (the pain is so severe every minute) had i known for sure i had classic TN.
even the doctor said i don't have TN but Trigeminal Neuropathy ...
and he was a but hiesitant because it started right after a dental proceure.
logically - had there been a nerve compressing there - the pain would have shown before.
it's more logical that a local nerve was hit during the procedure.. on something else happened (that also caused the change in the look of my jaw that i described here several times)
i wouldn't mind the risk of surgery (of course i would learn them first) - but logically it doesn't fit to me .
and the doctor also said that even though he defiently saw a blood vessel - he can't be sure that's the reason for the pain.
also the descripton of my pain doesn't fit the classic defenition of TN. .so i may go an MVD for nothing .
are there cases that an MVD was completly suceesful for a TN that started because of a dental work ?
i WOULD try the tegretol as a diagnostic elemnt.. but it will take time.. since i'm on Cymbalta now.. and the doctors don't want to mix them both.
Cymbalta is sometimes prescribed for trigeminal neuropathic pain. Other meds that are also used with that variety of pain are the trycyclic antidepressants like Amitriptyline and Nortriptyline (and about 10 others), Lyrica, Baclofen, and NSRIs like Methadone. Given the association of your face pain with a discrete medical event in the dental work, I would also be hesitant to recommend MVD, until you have a positive indicator for TN as such. A positive response to Tegretol would be such an indicator. But barring such positive confirmation, MVD could prove to be something of a long-shot Hail-Mary pass.
as much as i would love to go TODAY to any operation that would end this suffering... i for myself not sure of the diagnosis... so i won't do anything especially not before trying Tegertol.
had i known for sure i had CLASSIC TN and was offered to do an MVD - i would have done it.
Hi Red, I am wondering also if an MVD would be best for me now before the pain progresses and/or I am not healthy enough for the surgery. I know a surgery close to the onset of the condition and a younger age make the prospects for success greater. I will be 70 in two years and have had the TN for about 6 months which makes me think now, within a year or so, rather than later might be best. I am managing with the medication but may increase it. I have TN 1 and I take 400 mg of Gabapentin, 60 mg of Baclofen, and 10 mg of Nortriptlyn. I have an MRI scheduled for later this month and then a check back with the neurosurgeon, Dr. Kyle Kim, with Group Health in Seattle who is very highly regarded in his field and is experienced with TN surgeries. I know these are tough decisions but I like to get all the information and views I can and am undecided on this. Thanks, Mary
Richard A. "Red" Lawhern said:
Most physicians would prefer medication over surgery, if the option is available. All surgery has some degree of risk in long term pain recurrence or other side effects of surgery itself. If you respond to Tegretol, Oxcarbamazepine, or Gabapentin, then that will tend to confirm a diagnosis of TN. And it may give you sufficient relief that surgery is no longer a pressing or immediate need. You can re-visit the issue later if your pain breaks through the meds.
Mary Helen, I obviously cannot put "shoulds" on your head in a situation like yours, and I won't. I would offer a couple of observations.
First, your medication levels are on the low side, so you have room to increase if you need to.
Second, unless you have high blood pressure or a history of stroke or cardiac issues, just about anybody in your general age range would be considered a candidate for MVD if they have now or have in the past had Type I TN symptoms -- the electric shock stabs of pain. The procedure isn't perfect, however, and some patients either do not get a full cessation of their pain or deal with a variety of surgical side effects. Be guided of course by the information provided by Dr. Kim.
Thanks, Red. I am in good health and hope to be so for a while. Dr. Kim, the neurosurgeon, will not say a "should" either but I can tell he thinks I would be a good candidate now, while my neurologist seems to be against surgeries. I think I will wait a bit and make the final decision later. I appreciate your answer. Mary Richard A. "Red" Lawhern said:
Mary Helen, I obviously cannot put "shoulds" on your head in a situation like yours, and I won't. I would offer a couple of observations.
First, your medication levels are on the low side, so you have room to increase if you need to.
Second, unless you have high blood pressure or a history of stroke or cardiac issues, just about anybody in your general age range would be considered a candidate for MVD if they have now or have in the past had Type I TN symptoms -- the electric shock stabs of pain. The procedure isn't perfect, however, and some patients either do not get a full cessation of their pain or deal with a variety of surgical side effects. Be guided of course by the information provided by Dr. Kim.
Your situation sounds pretty similar to mine, and I decided not to do the MVD. The neurosurgeon is willing to do it later if things get more desperate (there is a compression, but it's not totally clear that's the cause). But for now I'm sticking with the meds.
I've accepted that the diagnosis is never going to be clear in my case. Maybe in the future there will be new research or imaging options. But more likely I'll need to make the best decisions I can with the information I do have. Every doctor thinks they have the answer, and it's always different. But hoping to find more peace and better quality of life by accepting that they don't really know.
Nir, I would start the med --- you will know within a few days if it stops all pain, it is classic TN1 = very likely
I was on it for a year --- My oral surgeon yanked my neck during the time I was "out" -- because whiplash causes TN
Could not take the side effects after a year --- studied here and on the book "Striking Back" - and flew to Michigan to have MVD -- now 90% better -- and better every week ---- ONE year anniversary is a good guage - and I am not there till Oct.
Keep learning all you can!!!!
If the med does not work -- I would get as many surgical opinions as possible - and do research on everything like you are!
since mine started after a dental work - it's more logically that the nerve injured was a local nerve.
but - i can, theoratically, also understand - that maybe in the dental process my head was "switched" aside (let's put it like that) and the vesseles on the nerved pressed. in my case i had a definite change in the LOOK on the face.. like my face got twisted on one side. i can't really describe it. everyone knows me in the first year said "something weird in my face"
i will sure try TEGRETOL before . but i guess the dilemma was stay - no matter what the tegrtol experience results would be. (even if the tegretol works - i'll have doubts.. and even if it doesn't work - i'll have doubts).
i'm on my sencond week of meds.. there is a very slight improvement. but really really really not enough.
would love to hear more about your story. how it started . how old are u ?
mac said:
Hi Nir,
Your situation sounds pretty similar to mine, and I decided not to do the MVD. The neurosurgeon is willing to do it later if things get more desperate (there is a compression, but it's not totally clear that's the cause). But for now I'm sticking with the meds.
I've accepted that the diagnosis is never going to be clear in my case. Maybe in the future there will be new research or imaging options. But more likely I'll need to make the best decisions I can with the information I do have. Every doctor thinks they have the answer, and it's always different. But hoping to find more peace and better quality of life by accepting that they don't really know.
i remember your story - you have the MVD i see.. but still in pain ?
i'll be on a dillema whatevere the TEGRETOL will work or not..
my doctor said the TEGRETOL is an indicaation - but surely not a defenetive one.
i can not responde to TEGRETOL but respond to the MVD.. and viceversa.
thanks you all.
i guess it's a good thing i found someone who's willing to operate. .cause up till this week.. i was one of those nobody saw anything in the MRI.
i know this neurosurgeon is a very good one here in Israel. so i trust him. (and i know he doesn't "run' to operate , cause there were two other girls went to him with the same story- and in thier cases he said - he saw nothing on the MRI so he can't operate.
Kc Dancer Kc said:
Nir, I would start the med --- you will know within a few days if it stops all pain, it is classic TN1 = very likely
I was on it for a year --- My oral surgeon yanked my neck during the time I was "out" -- because whiplash causes TN
Could not take the side effects after a year --- studied here and on the book "Striking Back" - and flew to Michigan to have MVD -- now 90% better -- and better every week ---- ONE year anniversary is a good guage - and I am not there till Oct.
Keep learning all you can!!!!
If the med does not work -- I would get as many surgical opinions as possible - and do research on everything like you are!
My pain came back week 11 -- but it was only a 2 on a scale of 1-10 AND less often - less intense -- and now it only happens once every two weeks for a few min at a 1 or less ----- going away more each week --- my year anniversary MVD is not till October -- for nerve to completely settle--- so even if MVD -- pain can come and go = but way less for a year --- Overall my pain and what it does to me has been reduced by 95% or better!!!!!
I only knew Oral surgeon yanked my (already arthritised) neck - because after a year of research -- it was the only explanation that I was in the emergency room -- FOUR HOURS later!
But I was perplexed soooo long because my TN is on opposite side of where he was pulling, digging, drilling, and sawing bone
Tegretol also has a cousin -=- Trileptal --- AND trileptal has it's own generic --- SOME people (like my son - for other medical reasons ) has to be on a certain brand of his anti-seizure med -- the other 2 in THAT med family do not work for him
So be aware there could be a filler, a molocule difference in the same family of med - before you get your MVD booked!!!!!
I had some pain for several years, then had a bunch of dental work over a two year period trying to fix it, and then after one of several root canals the pain really got serious and has been going on for more than five years. I'm forty. So it could be that I was already developing TN, and the dental work was unnecessary, and/or the dental work made whatever was going on worse. Probably both and probably I'll never know. Tegretol doesn't help, but gabapentin and a few other things do help somewhat (not enough). Trying to accept it, get the meds I need to function, and move on with as much of my life as possible. It's hard, and maybe later I'll try new meds and procedures, but I feel like it's all just making me sicker, for the most part.
Nir Morita said:
dear Mac -
first - thanks.
did your "case" started after a dental work ?
since mine started after a dental work - it's more logically that the nerve injured was a local nerve.
but - i can, theoratically, also understand - that maybe in the dental process my head was "switched" aside (let's put it like that) and the vesseles on the nerved pressed. in my case i had a definite change in the LOOK on the face.. like my face got twisted on one side. i can't really describe it. everyone knows me in the first year said "something weird in my face"
i will sure try TEGRETOL before . but i guess the dilemma was stay - no matter what the tegrtol experience results would be. (even if the tegretol works - i'll have doubts.. and even if it doesn't work - i'll have doubts).
i'm on my sencond week of meds.. there is a very slight improvement. but really really really not enough.
would love to hear more about your story. how it started . how old are u ?
mac said:
Hi Nir,
Your situation sounds pretty similar to mine, and I decided not to do the MVD. The neurosurgeon is willing to do it later if things get more desperate (there is a compression, but it's not totally clear that's the cause). But for now I'm sticking with the meds.
I've accepted that the diagnosis is never going to be clear in my case. Maybe in the future there will be new research or imaging options. But more likely I'll need to make the best decisions I can with the information I do have. Every doctor thinks they have the answer, and it's always different. But hoping to find more peace and better quality of life by accepting that they don't really know.
I am 63 and have had tn for the past 8 years. You seem to know so much about this so I wanted to write. Mine was triggered by a tooth breaking. Now I am on oxcarbazepin 300 mg 4 times a day and gabapentin 300 4 times a day. I am pretty zonked out and think I am at the high end of medication. I was off the gabapentin for about 2 years but had to go back on it after some really bad breakthrough pain in the last 5 months, I will do anything that helps or go anywhere....please give me some advice.
My advice, Kathie, would be to talk with a neurologist about trading off part of the dose of one of your present meds for Baclofen, Flexeril, or low-dose Valium. These boosters are frequently helpful in breakthrough pain, with a lower level of side effects. You're not quite at the high end for Gabapentin, but in combination with the Oxcarbamazepine, you are probably close. The association of your TN emergence with the broken tooth and the dental procedure done to extract the remains of the tooth might or might not be coincidental. That can be a tough call.
Of what nature is your pain -- predominantly Type I electric shocks or Type II achy/burning pain? If the latter, then there are other medication alternatives, specifically the tricyclic antidepressant drugs that have crossover actions against neuropathic pain. Those would include Amitriptyline and Nortriptyline, among others.
Kathie, my experience agrees with what Red is suggesting. The neurologist also told me that it should me no problem to take two different anticonvulsants at a time, but I wasn't able to manage due to drowsiness and memory problems. But a low dose TCA (nortriptyline, for me) with one of those might help a lot.
Thank you for your response. I appreciate the information and will check it out. Has anyone heard about Laser treatment. I was reading about that but there isn't much information on it....
I hate having to take so much medication and always try to lower the dose of the gabapentin when I can.
kc - thank you for all the explanation and telling your story. it's so hopeful to here about your TN.
it's "wiered" you responded to MVD -since your injury seems at least to come from a local injury - an i right ? maybe some procedures in the neck/head can "press" this blood vessel that's always been there and that's why we get this pain after some dental/neck works.
thanks !
Kc Dancer Kc said:
My pain came back week 11 -- but it was only a 2 on a scale of 1-10 AND less often - less intense -- and now it only happens once every two weeks for a few min at a 1 or less ----- going away more each week --- my year anniversary MVD is not till October -- for nerve to completely settle--- so even if MVD -- pain can come and go = but way less for a year --- Overall my pain and what it does to me has been reduced by 95% or better!!!!!
I only knew Oral surgeon yanked my (already arthritised) neck - because after a year of research -- it was the only explanation that I was in the emergency room -- FOUR HOURS later!
But I was perplexed soooo long because my TN is on opposite side of where he was pulling, digging, drilling, and sawing bone
Tegretol also has a cousin -=- Trileptal --- AND trileptal has it's own generic --- SOME people (like my son - for other medical reasons ) has to be on a certain brand of his anti-seizure med -- the other 2 in THAT med family do not work for him
So be aware there could be a filler, a molocule difference in the same family of med - before you get your MVD booked!!!!!