Trigeminal Neuralgia Support Group

Trigeminal neuralgia, or Tic Douloureux, is a neuropathic disorder of the trigeminal nerve that causes episodes of intense pain in the eyes, lips, nose, scalp, forehead, and jaw. Trigeminal neuralgia is considered by many to be among the most painful of conditions.

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MVD Surgery

Hello everyone,

I've come to a point where I'm in alot of pain and am totally desparate for relief. I've received my 3rd opinion from a neuroseugeon and all 3 thought that I should get MVD surgery done. Has anyone gotten the surgery done? I'd like to get so,e feedback frm you guys. I'm planning on doing it in December. The surgeon says I will need to take about 6 weeks off work and school.
I'm probably going to be getting I done at the USC hospital in Los Angeles by Dr Steven Gionnatta. Has anyone heard of him?? I've just had this pain for too long and can't really bear with it anymore. I feel like I'm going to go crazy. None of the mediations work for me anymore and the doctors don't know what to do. I feel like no one understands nor cares. I just wish there was a cure without surgery. I'm totally scared of having someone drill into my head and sticking teflon in it and then closing it with a metal plate and bolts. Now that doesn't sound like fun, but then again, maybe it's better than living in pain like this.

Replies

deleted_user
deleted_user

Hi Cyn228,I am a member of the T.N.GROUP.My name is Janice,i had TN,for five years.I to could not take any more,and had such bad side
effects with all the medication.So i had the operation,M.V.D,On the 5th of March this year.
I was in hospital 8 days.I have been pain free since.But it has not been easy.Remember everybody is different,i wasnt well in hospital,just unlucky.Very high temperature,had a lumber puncture,turns out i had Pneumonia.Then clinical Meningitis,can be connected to any op that concerns the brain.My surgeon and all staff were amazing.
They said it will be at least a year before i will be fully recovered.I think 6 weeks is
not giving you much time,after the op.You will rest quite a lot.I have stopped most of the tablets,except at bed time.I thank God for every day i have free from pain.Get in touch any time.I will be thinking about you.Lots of hugs.I live in Edinburg,Scotland.Janice.x.
deleted_user
deleted_user

I understand where you are in your search. I had MVD done by Peter Jannetta with a bad outcome, (he parlyzed my face) however part of it was that he ignored presurgical tests tht indicated the chance was great it would happen.
I tell you this because with 3 concurring opinions, from different neurosurgical practces I hope, it sounds as though MVD may be right for you. I hope that they have all discussed with you why they believe MVD is right vs other procedures/therapiues that are less invasive. What does your neurologist think? Have you been on enough attempts at drugs before taking this step? (Have you tried alternate therpies - acupuncture, hypnosis, some people say they get relief from 'atlas chiropractic' (I dont know what it is but have heard some success stories.)
You need to do what you think is best (stating the obvious) but make sure this is your decidsion and not the pain's. I have ften let the pain choose for me and it was not always the best decision.
It is always important to go with your own personal doc. It is also important to make sure he/she does more than one specific procedure for TN as they may recommend that one because of their own familiarity with it.
leej,
author A PAINED LIFE, a chronic pain journey

(I don't want to get into a debate about TNA but they do tend to recommend MVD over other surgeries (based on my conversations at TNA conferences). It may be because Peter Jannetta was one of the medical directors Their recommendations need to be considered as just one voice, your doctor (s) voices being much more important.))
deleted_user
deleted_user

Hi Cyn,
I recently went on a super lowfat and soft diet and my TN strikes went mostly in to remission and I was able to go off of my carbazemine. I now am dealing with tendonitis in my face which is horrid and I too am blessed with some real nut head doctors. I have blond hair so they think my IQ is 100 points lower than it is....
Are you still taking Lyrica? I swear that stuff gave me worse headaches. Just a thought. Well, just adding my 2 cents. Perhaps you are one of those lucky ones who benefit from the surgery and leave us forever. That would be wonderful. But I thought I would offer my suggestions on what has helped me in case it might help you in the meantime. Avoid any heavy crunching or chewing with your mouth. That has really helped me. Good luck sweetie, we are here for you! -Holliday
deleted_user
deleted_user

Lee,
I hav tried acupuncture many times but seems like it doesn't do much. I've tried all meds possible, even the Tegratol. That gave me a really bad side effect that lasted for over a week. Seems the all 3 neurosurgeons say that I should get the surgery because I'd be a good canidate due to my age. They say since I'm young,my body should be able to bounce right back and handle the surgery. My neurologist has basically given up on me. He says I should just do what the neurosurgeons tell me. I really don't want to get surgery and am scared. I've read all these experiences that people have had with that surgery and it doesn't sound as great but then the last surgeon even said that the MVD will cure it for good. He seems very positive with this surgery. I'm currently in alot of pain now and am still taking Lyrica, which doesn't do anything for me but my neurologist thinks I should still be on it. I just don't know what to do anymore. Seems like Doctors and neurologist just want to throw a bunch of meds at you and send u home thinking that will cure it. I don't know but sometimes I really feel like they don't even care nor even understand what we're going through. Actually, no one does. That's why I'm on here. Thanks for yourfeedback and everyone elses also. I wish u all the best =)
May we wake up and be able to smile tmrw.
deleted_user
deleted_user

Lee,
I hav tried acupuncture many times but seems like it doesn't do much. I've tried all meds possible, even the Tegratol. That gave me a really bad side effect that lasted for over a week. Seems the all 3 neurosurgeons say that I should get the surgery because I'd be a good canidate due to my age. They say since I'm young,my body should be able to bounce right back and handle the surgery. My neurologist has basically given up on me. He says I should just do what the neurosurgeons tell me. I really don't want to get surgery and am scared. I've read all these experiences that people have had with that surgery and it doesn't sound as great but then the last surgeon even said that the MVD will cure it for good. He seems very positive with this surgery. I'm currently in alot of pain now and am still taking Lyrica, which doesn't do anything for me but my neurologist thinks I should still be on it. I just don't know what to do anymore. Seems like Doctors and neurologist just want to throw a bunch of meds at you and send u home thinking that will cure it. I don't know but sometimes I really feel like they don't even care nor even understand what we're going through. Actually, no one does. That's why I'm on here. Thanks for yourfeedback and everyone elses also. I wish u all the best =)
May we wake up and be able to smile tmrw. +
I know the terror it is going thru all that. As to tegretol, I have to say my experience as bad the firt time but e did try it 3 additional times and the 4th time t worked and I had no side effects. (The first time I had visual spatil hllucinations, balnce problems, awful, awful, each additional time less and then none.) Not to try to talk you into anything one way or the other but just to let you know what my experience was. (My tic was so bad that after 6 surgeries, etc I was advised by my docs that 'rational suicide' would be acceptable in my case.)
It is hard to tell sometimes if they do care. Sometimes they seem to have given up because they are affected by our suffering and don;t know what to do. Other times they are just schmucks.I learned the hard way that anyone who makes a guarantee is not necessarily the nest person. No one can guarantee a cure. If Jannetta had guaranteed he could cure me rather than guarantee he would not paralyze my face, I would have been out of that office in a minute.
Are you on pain medication also? That may make a difference. You might also want to get a second neurological opinion as well as talk with a pain management specialist.
You know what is best for you. Agan though please don;t let the pain make the decision. It is hard to take your time but I did mostly what they told me to do without letting my logical mind think about it. That was not always the best thing for mr.
I have had, all told, 11 brain surgeries and am currently with a brain implant, although my pain is not just TN but atypical TN and atypical facial as well. I hope you have some people that you cn tak with about the suggestions the doctors are making and are not alone in this.
Im glad this site is here for you to talk about it and get the opinions and experiences of others.
many hugs, leej
deleted_user
deleted_user

I am a patient advocate with the Trigeminal Neuralgia Association. For 10
years I have researched a new diet therapy that stops TN pain by limiting
saturated fat. Not all fats. Just the excessive saturated fat in the American
diet. I made a presentation on the history and effectiveness of this diet at
TNA's 2004 National Conference at the Disney World Resort. To try this diet email your mailing address to frank@sokolitz.com or call 248-642-7235 for an eight-page report with diet instructions, the diet's history, testimonials, and the amount of saturated fat in 140 foods.

If you have typical TN and are currently in pain, or would be in pain if you
stopped medication, I would like you to consider enrolling in a study I am conducting to establish the efficacy of this diet.

A patient's success story: Mrs. Churukian is a Michigan patient
with a thirty-year history of TN. She had two glycerol injections and three radiofrequency rhizotomies. All were temporarily successful. But ultimately the neurosurgeon at the University of Michigan said nothing more could be
done to stop her pain. For health reasons MVD was not an option. She was
experiencing daily attacks of excruciating pain even while sleeping. The
diet stopped her pain in less than a week and at 86 she has been pain free
for 10 years. She does not require medication. There was also improvement
in blood pressure, cholesterol, weight loss and other health issues.
deleted_user
deleted_user

I missed your report at the Fla. convention. The lady you refer to here, how do you know that there was a causal relationship between the diet and the remission as opposed to a spontaneous remission?
Do you have a larger population where the results were the same?
leej
deleted_user
deleted_user

Dear leej,
I do have other patients who have had success with this diet, but so far they all have typical TN. Success with the diet comes quickly. It can be the next day, but almost always within a week. Suggest you get my report (see above post) and judge for yourself. There are three testimonials in the report but I can send more. Thank you for your interest, Frank Sherwood
deleted_user
deleted_user

Cyn228, Things such as the diet certainly can't hurt, at least in the short run.(f it's healthy standing on its own.) I am always suspect of testimonials vs. hard science. (t appears that Frank is in the process of doing a study.)
As a certified hypnotherapist I feel this is true for most alternative therapies including hypnoss, acupuncture, atlas chiropractic, etc. They are always worth a try as most are relatively benign in the scheme of things.
Frank brings up a good point. Are you diagnosed with typical TN or atypical TN, or atypical face pain? Leej
deleted_user
deleted_user

cyn, i had the MVD a rear ago and have been pain free since. it was the best thing i ever did. i have other medical issues as well as the TN. basically TN is out of my life. i think i was in the hosp 4 or 5 days. my surgery was the beginning of nov and i went out shopping on black friday that year. i know i am nuts but i did it. the surgery wasnt all that bad. in mine what happend was a main artery was wrapped around mt trigeminal nerve. the neurosurgeon fixed it. i would say the 1st 2-3 weeks of recovery was the worst. i couldnt really tell if the pain i was having was from the surgery or TN. if you have any questions feel free to send me a message.
take care.
elaine
deleted_user
deleted_user

Hello Cyn228, I have just joined the TN Group. I know how you feel. After having face & jaw pain for 10 years with little to no relief from different meds & my weight dropping to 103lbs I decided that the MVD may be my only lifesaver. My neurosurgeon Dr Christopher Honey showed my hubby & myself the MRI of that blood vessel wrapped around the nerve. We could see the difference between the left & right side of my brain. Dr Honey is one of the most MVD experienced surgeons in his field so it was not hard to decide that I wanted to take this step. I had my surgery at VGH in Vancouver, British Columbia,Canada three years ago. I woke up to no face pain!! Well, a hell of a headache but I could finally eat, talk and laugh again without pain. I was in hospital for only 2 days. I did not have the metal plate but a teflon plug instead. I took 3 months to recuperate and was glad I did. You may want to ask your Doctor how many MVD surgeries he has done if you you are worried about his experience. You will do fine...try to be brave. Keep as healthy as you can before surgery, stay hydrated and away from public germs if possible. Let us know your surgery date please so we can send you some positive energy OK
deleted_user
deleted_user

DID THE SURGERY LEAVE A DEAD SPOT IN THE BACK OF YOUR HEAR ABOVE WHERE THEY BORED THE HOLE IN YOUR HEAD. i HAD IT DONE THE 17TH OF JUNE AND I AM STILL HAVING SOME PAIN IN THE SAME AREA.HAD TO GO BACK ON THE TEGRETOL 2 A DAY AND MY NECK ALSO GET A LOT OF CREEKS IN IT RIGHT BELOW WHERE THE SURGERY WAS AND MY NECK STAYS STIFF A LOT
deleted_user
deleted_user

Hi Cyn,

I too am scheduled for MVD in December, the 15th to be exact. I'm also very scared! The big difference between your surgery and mind is that they will replace the bone (skull) fragment they drilled from my head and keep it in place with bone glue.

I have been on medications for a year and a half and my body keeps adjusting and the pain breaks through. I've tried acupuncture and the diet, nothing seems to work. Doctors say I'm a good candidate because of my age also. I'm very concerned though as I have several other health conditions.

I'm curious, someone said the recovery took them three months... If that person reads this, would you please explain what recovery was like? When did you know you were recovered?

Anyone else that has had this surgery... could you please explain how bad the headache is afterwards? Also, did you get nausea and vomiting after the surgery?

I'm thinking of you Cyn. When's your date?

Kimberley
deleted_user
deleted_user

Hi Cyn, .. no, I've not heard about your doctor in LA, but I do have this "handy-dandy" little book called, "America's Top Doctors" that I got at Barnes/Noble, and under "Gamma Knife", there is a Dr. K. Ott @ Scripps Hospital in La Jolla, & under "Microvascular Surgery", there is a Dr. Edward Diao @ UCSF in San Francisco, & under "Trigeminal Neuralgia", there is a Dr. Keith Black at Cedars Sinai in LA.
Hope that helps you & good luck.

Lynne
deleted_user
deleted_user

I just found this site in a search for TN sufferers that have been through MVD. I had MVD surgery on March 3rd 2010.
My journey has been a long one just like many of yours have been. I have seen 3 neurologists, 1 pain doctor (forget the title), and 1 neurosurgeon. The neurologists had me on so many medications for the first year it was ridiculous. I tried everything from Lyrica to Oxycarbamazapine. None of them worked! Some of them were at the point that they thought the pain was fictitious and recommended that I see a psychologist. I had heard of gamma knife surgery as a surgical solution and that was about it. The pain I was dealing with was affecting my work and my personal life and no one could understand. I finally met with a surgeon after a friend had told me about him. For the first time someone wanted to find a solution. Within a week he had me scheduled for a glycerol injection to pin point whether or not I truly had TN. The surgery was a success so to speak. I had instant pain relief and completely numb face. Unfortunately, I had pain come back after 5 weeks. It was really strange because I could feel the shocks even through the numbness. I went back into my surgeon and he recommended MVD. He had me scheduled for the surgery in one week.
I had my surgery at Highline hospital in Burien, WA. I really don't remember much from the first day. I remember waking up with blood on the side of my head near my temple and having no idea what it was from. I found out later that it was from the halo device they used during the surgery. The hardest thing for me for the first few days after surgery was dealing with the pain in my neck. It was really hard to look straight forward. I had physical and occupational therapy in the hospital to help work on the muscles in my neck relax. I had taken so many pain medications in the past two years that the pain medication that they had given me in the hospital (dillodid sp?) wasn't taking the edge of at all. I spent the whole week (yes 7 days) in the hospital with little pain relief from the surgery. The surgery was a success. My doctor found that a blood vessel had wrapped like a corkscrew around my trigeminal nerve in the area of my brain stem. Because of this my incision was quite a bit longer than most I have seen from this procedure. The first week that I was at home I didn't leave my bed other than to go to the bathroom. The second and third week I migrated out to the sofa but couldn't sit up or stand up for more than 10 minutes. You don't realize how heavy your head really is until your neck muscles can't hold it up, lol. I think that not being able to sit or stand up for any length of time was the hardest thing to deal with.
Another thing that I forgot... while I was in the hospital a different type of nerve pain started up and they had to put me back on tegretol. My doctor thinks that it's because not only do I have TN but I also have ATN. So now I'm taking Tegritol four times a day. He took me off of narcotics after 6 weeks and I think that was too early. I'm now at 9 weeks post op and I'm still dealing with quite a bit of pain from the surgery and nothing to help except for the tramadol he gave me and that doesn't do anything!
I would recommend this surgery to anyone suffering from TN, but as far as post op care is concerned I would not recommend my doctor. Surgeons are great but they definitely are lacking in the humility and care aspect when it comes to the care of their patients.