Getting through the pain

1

I have been dealing with increased episodes of pain in my lower left jaw lately and I'm wondering if anyone has found that trying to sustain regular daily activities exasperates and or increases the pain. I have always heard the old addage of "playing through pain" and it's not working for me it seems.

I contacted the Dr. last week and he doubled my dosage of Gabapentin from 3x300mg to 6x300mg daily. I thought it was starting to work on Saturday morning, but by evening I was getting hammered by 30 second JOLTS about every 3 to 5 minutes and it hasn't stopped since. Sleeping has been a challenge at best. I just hope the medication kicks in soon, this has become very difficult to handle.

I am going in for a 3D MRI in about a week to see what the best course of action will be for my condition. My Doctor thought that MVD looked like a good fix for my diagnosis considering I'm 61 fairly healthy and have type 1 TN. I finally have work lined up for the next six months and am reluctant to have the procedure done because of the lengthy recovery time and actually considered the Gamma Knife to get me thru until I have the time for MVD. I have heard that getting the Gamma Knife first can cause problems later on because of scar and or nerve tissue damage. Any help in this area would be appreciated.

I would love to hear from anyone who has been thru the MVD procedure as to their thoughts concerning recovery time and results.

Thank you very much. John

2

John, my personal advice based on years of literature study as a layman, would be strongly AGAINST Gamma Knife, especially with Type I TN, for precisely the reasons you state. The procedure is not as often successful initially and does not last as long as either MVD or RF Rhizotomy. More important, the scarring that it introduces around the trigeminal nerve can significantly reduce the likelihood of success in any follow-on MVD procedure. I realize that ability to work is a pertinent concern, but you have no guarantees of a shorter recovery period with GK versus MVD. Many patients report that even in successful GK procedures, the effects might not be felt until weeks later. Recovery periods do vary among both groups of patients, of course. However, I have rarely heard GK patients report that their TN pain ceased on waking up from surgery, whereas I've heard that outcome from quite a number of MVD patients.

Go in Peace and Power

Red

3

I'm with Red here.

I'm a Type I TN sufferer too and I've been looking into the choice of GK vs. MVD recently too and I think you have framed many of the important considerations. I'm opting for MVD.

Gamma Knife is more like "burning" a hole in the nerve and mixing up the pathways. Well, I don't like the idea of radiation near the brain stem? No thanks. And there's something like a 65%-80% chance it works and could lead to trouble when the brain re-routs the signals. They say it takes several weeks to see results and we haven't addressed the source of the problem and maybe made new problems we we need to do an MVD later.

That pretty much leaves MVD for me. Yes, it's brain surgery and yes that scares me...a LOT, but it is attempting to solve the problem.

Just one dude's opinion though, for what it's worth.

4

I'm with Red and Craig on this one.

I have type 1 TN and a MRI has shown a blood vessel pressing on the nerve. I am a suitable MVD candidate and that's the route I will chose to go as it is a 'non destructive' procedure. It's scares me too but I'm sure it's the sensible option and the best first step to try.

With regard to gabapentin my neurologist is of the view that if 600mg does not work then a higher dose will not work either. On his advice my doctor reduced my dosage from 1800mg a day to 600mg and added 50mg of amitriptyline. I've been on this combination for around six weeks now and it is the longest period I have had for over a year without really bad pains in my jaw. The amitriptyline does make you a bit dozy to start with but that has pretty much worn off now.

I hope your pain relents soon. :-)

5

Emmy,

Your neurologist has taken a position about dose thresholds that I don't think many other medical professionals would support -- though I am of course happy to hear that you're doing better.

My wife was titrated up on Gabapentin from 600 mg/day to her present level of 2700 mg/day, and observed increased improvement with each increase in dose. She has done well for seven years on 2700 mg/day, though there is always a background of pain at low to moderate levels for her. She acclimated well to the drug and has few present side effects. Certainly not everybody reacts this way to Gabapentin. Some cannot tolerate doses even as high as 1200 mg/day -- and so far I don't think medical science understands why patient sensitivity is so widely variable.

That said, the combination of Gabapentin and Amitriptyline does seem to offer effective pain control to quite a number of people. I'm pleased to hear it has for you.

Regards,Red

6

If gabapentin is the only drug you are on? then you really are not even being treated at all is my opinion. I took nuerontin back in the day before it was available in generic form. 02,03 and part of 04. i was told no matter what dosage i took, it was eliminated from the body in 6 hours. my burning, electrical zapping tongue, and crushing jaw pain was constant at the time. with the nuerontin i was also taking percocet, 2 anti depressants, a muscle relaxer, and a anti aniexty med… all them meds together… gave me about a 5 to 10% decrease from the jaw pressure for about 1/2 hour on a good day… i used to call nuerontin my really stupid drug at 600mg every 6 hours… i eventually quit taking it and got part of my mind back even though the pain remained the same…

7

guys how does one cope at work with regular intervals of pain and drowsyness from the meds.

8

I have to say something here. I have TN type 1

I had MVD in 2007. Within two weeks i was at work, disappointed with the MVD results because the pain remained, it was less, but with medications it got controlled. Over time the breakthrough pain obligated the dr to increase and change medications.

In February of 2011 I had Gamma Knife. The pain had gotten to a level that I was taking 4800 mg of gabapenin and about 4 other medications. There were not many medication options for me anymore, but I was still working. I was scared, but a team of neurologist as OSU agreed it was the best option. It was the worst mistake. GK made the pain so much worse, no medication since then is working. I have pain every 3 minutes or so day and night. Cannot talk, cannot eat properly ( I have lot several pounds). I'm still so medicated I can hardly stand up. I have missed work since April and now, I am looking at the future and I am scared.

This has basically ruined my life.

Carolina

9

Hi John,

I Type1 TN for eight years. It was in the lower left branch. Eating, talking, swallowing or anything touching the face would set off the pain. I was eventually on three meds, Tegretol, Lyrica and Baclofen and the pain was still getting worse. I was at the limit with the Tegretol, so I looked into the Gamma Knife and the MVD. I found a neurosurgeon that was three hours away(the one I talked to in my area didn't have much experience) that had alot of knowledge and experience in the MVD. I was told that the GK was not an option for me because I was too young and in good health and he felt that I had compression and I needed the MVD. He said once you have the GK then the MVD may not work. I had two MRI's and neither showed compression. He said from my medical history that he would find compression. I had the MVD in May 2009 and he found two arteries and two veins. I had the surgery on Thursday and went home on Saturday.I was only in ICU for one night. I had someone with me at home for the first week and then I was on my own and I was fine. I didn't go back to work for six weeks but could probably have went earlier if part time. For me the MVD has worked. I have been completely pain free from the nerve since I woke up from surgery. My only regret is that I did not have this done sooner. I suffered for eight years and now am pain free. Good luck to you in whatever decision you make. Connie

10

Sorry this took so long to respond to but I have been in and out of pain for sometime. I had the MRI's and they showed no vascular compression. The Dr. at OHSU in Portland said it wouldn't be the best thing to do the MVD as he was sure he wouldn't find anything that was causing the problem so he suggested I have a Radio Frequency lesion done. This procedure they run a hollow needle thru your jaw just below and sideways to the corner of your mouth and run it thru the hole in your jaw towards the ear. Then they hit your nerve with radio waves and kinda fry the nerve. It is 90 % sucessful and comes back with only mimnumbness to the side of your cheek, teeth and gums. Unfortunately I was the 10%. After the procedure I had one of the worst events yet that lasted over a three week period. I am now much better after starting back on the Gabapentin and Tegratol.

I went back to the surgeon two weeks later and he suggested that he do a surgery that is similar to a MVD but they "irritate" the nerve by cutting it length wise. He has only performed this on about 30 patients but has had good success with the sugery. The idea is to disrupt or scramble the nerve signals.

The problem is, it's almost identical to the MVD but there is fewer cases to determine if there will be a good outcome. I'm not sure I'm willing to be a ginea pig for him.

My wife called me today after having lunch with a nurse friend who's husband had TN and they learned his was caused by Herpes virus. He now takes Accluvar at the first sign of a problem and he has been pain free for several years now.

I'm wondering if anyone else has heard of this before or has been treated with a herpes drug?

11

The variety of facial pain associated with the Herpes Zoster virus is "Post-Herpetic" Neuralgia. Although it sometimes attacks the trigeminal system, this particular face pain is regarded as a "symptomatic" form of TN that has different causes from the classic variety which emerges spontaneously. My wife has been through such an attack.

"Acyclovir, valacyclovir, or famciclovir can be used to treat acute herpes zoster and to reduce the severity and duration of viral replication." See http://www.skintherapyletter.com/2004/9.8/1.html

The procedure you outline for "splitting the nerve lengthwise" is a new one on me, though I've been studying this literature for over 15 years. It sounds like a variation on nerve sectioning, which has been regarded for years as a sort of "hail Mary pass" or "last resort" operation. Dividing a structure of this size lengthwise is a VERY delicate proposition. Likewise, when the nerve is deeply sectioned, there is always a substantial risk of even WORSE pain later, in what is called "deafferentiation" pain. This type of pain occurs when a nerve pathway between peripheral sensing nerves and the Central Nervous System is severed, and the CNS tries to compensate for the lack of sensation by routing "around" the lesion. Phantom limb pain is thought to be caused in this way.

Candidly, I would intuitively share your reservations on this procedure. If a relative of mine was considering this operation, I would suggest that they ask first if there are any published long-term outcomes statistics or five-year case studies. Success is not really measured by patients having no pain when they first wake up. That can happen simply because the nerve has been manipulated enough to temporarily shut down; in a lot of patients, the nerve can "wake up" (with a vengeance) again when the shock of the manipulation wears off.

Go in Peace and Power

R.A. "Red" Lawhern, Ph.D.

Resident Research Analyst, LwTN

12

I am suspicious about why the Dr. doesn't seem to want to do MVD on you... You are type I, in good health, and the fact that the MRI doesn't show compression doesn't mean there aren't any. If you see on the blogs and discussions, the regret of many patients with successful MVDs are not having it done earlier, and not all of them showed compression on the nerve. If the surgery offered by your surgeon is similar to MVD, the surgeon will get to the nerve anyways, the logic plan would be to explore and remove the vascular compressions if he finds any and then, if there aren't, try to section the nerve. Causing a lesion on the nerve by surgery, ablation, or radiation at the end is a gamble and the lesion is not reversible. Red, can you weigh in on this?

One update on my situation, after my failed MVD and Gamma Knife. In August of this year I had Botox injected along V2 and V3 of the nerve by neurologist. The injections are superficial and practically painless. We tried Botox because it was the least invasive procedure before going with Glycerol injection, balloon compression or rizotomy. I had a failed MVD in 2007 and Gamma Knife that made things a lot worse in Ferbuary (Red, I should have read your reviews before going for it).

I haven't found much on Botox for TN, but a month after the injections my pain started to subside. If you read above in this discussion, you will see that I was in very bad shape and I've been on long term medical leave since April.

I don't have spasms with my pain. The pain are electric shocks and stabbing pain with sudden onset and various triggers along V2 and V3. The health insurance covered a big portion of the Botox and the procedure's co-pay was the same as an office visit. It was effective. Finally!!! I have been with no pain for 10 days straight. I wish I had done this earlier, but my doctor wasn't sure because I have no visible spasms associated with the pain.

If Botox doesn't work, there is no lesion on the nerve and the effect only last 3 months, there is almost no risk involved.

Now, I have lost sensitivity in my face (right side) as the pain was subsiding and this result may be the Botox alone, a combination of the Botox and the Gamma Knife, maybe it's the cyclical nature of the condition and I went on remission, and/or it's the result of all the prayers and spiritual healing, but the point is that there are options that don't further damage the nerve, and those -in my opinion- should be tried first.

Carolina

13

Carolina, thank you for your input. I'm going to see another Neurologist Dec. 1st and I'm hoping to get some more information about alternatives and input on medication.

This disease is such a wreckless, painful and ruthless problem that I can't believe that more isn't being done to address the problem. Maybe if a few congress men and women had it, there would be more done to cure it. Of course I would never wish this on anyone not even my worst enemy.

The Dr. that I saw at OHSU is supposed to be one of the best for TN and the MVD surgery. However, I just can't get myself to commit to the "new/experimental" procedure without some guarantees.

He even said that he was pretty sure that there wasn't a decompression or it would have showed up on the MRI's and he didn't feel good about going in there just to "look around".

So my feeling is, to keep on the meds, they seem to be working for now and then have a chat with the Dr. in Dec. and see what transpires. Hopefully something good will come out it all. Best wishes for a pain free life girl! John
Carolina said:

I am suspicious about why the Dr. doesn't seem to want to do MVD on you... You are type I, in good health, and the fact that the MRI doesn't show compression doesn't mean there aren't any. If you see on the blogs and discussions, the regret of many patients with successful MVDs are not having it done earlier, and not all of them showed compression on the nerve. If the surgery offered by your surgeon is similar to MVD, the surgeon will get to the nerve anyways, the logic plan would be to explore and remove the vascular compressions if he finds any and then, if there aren't, try to section the nerve. Causing a lesion on the nerve by surgery, ablation, or radiation at the end is a gamble and the lesion is not reversible. Red, can you weigh in on this?

One update on my situation, after my failed MVD and Gamma Knife. In August of this year I had Botox injected along V2 and V3 of the nerve by neurologist. The injections are superficial and practically painless. We tried Botox because it was the least invasive procedure before going with Glycerol injection, balloon compression or rizotomy. I had a failed MVD in 2007 and Gamma Knife that made things a lot worse in Ferbuary (Red, I should have read your reviews before going for it).

I haven't found much on Botox for TN, but a month after the injections my pain started to subside. If you read above in this discussion, you will see that I was in very bad shape and I've been on long term medical leave since April.

I don't have spasms with my pain. The pain are electric shocks and stabbing pain with sudden onset and various triggers along V2 and V3. The health insurance covered a big portion of the Botox and the procedure's co-pay was the same as an office visit. It was effective. Finally!!! I have been with no pain for 10 days straight. I wish I had done this earlier, but my doctor wasn't sure because I have no visible spasms associated with the pain.

If Botox doesn't work, there is no lesion on the nerve and the effect only last 3 months, there is almost no risk involved.

Now, I have lost sensitivity in my face (right side) as the pain was subsiding and this result may be the Botox alone, a combination of the Botox and the Gamma Knife, maybe it's the cyclical nature of the condition and I went on remission, and/or it's the result of all the prayers and spiritual healing, but the point is that there are options that don't further damage the nerve, and those -in my opinion- should be tried first.

Carolina