Hello again. I am contemplating the various surgeries for my TN. My pain doesn't seem as extreme as some of the folks on here. But none the less, I have it. I mainly have the options of the gamma knife and MVD. Have any of you who have had either of these surgeries had substantial nerve damage from them?

Please respond. Thanks.

Hi Omariffic,
I have had both the gamma knife and the mvd procedures done. It has been 8 months since my mvd procedure in June and I had the gamma knife in May. I am doing wonderful with no nerve damage that I've noticed at all. I was on a lot of medication before both procedures and now I am weaning myself off of everything. I have had no pains or twinges at all so far. If you haven't already read it, a wonderful book to get is Striking Back. I read that book so many times before I had anything done and tried to make sure I was very informed about everything. I hope this helps you.

Laureen

Here is what I have had: a radiofrequency rhizotomy (pain and medication free for 4-1/2 years but very numb and it threw my bite off--my hospital won't do them anymore--too risky), a balloon compression (created some eye pain and soreness and only off meds a few weeks but lower dose for a few months) and an MVD in October (successful and no problems from it). Recovery from the MVD took much longer but was worth it. Still the risks are higher and a little scarier. But the results last longer, generally speaking.

Glad to read that you are still doing well, Laureen. Keep us posted!

Hi, I am more than happy to answer your question. The number one procedure that I was told over and over again is mvd. The great book about tn called Striking Back says that also. All known documentation is that mvd is the first line procedure of the condition. I was scared and did not want it. So I made the decision to have the gamma knife. Well, 8 to 9 months later, I started getting this horrible non stop pain in all the 3 branch areas and my tongue. It feels like a million bees are on my face and keep biting me all the time. It will not stop. My tongue is like on fire. The doc says that the gamma knife damaged the nerve and this will not go away. So........I had the mvd this week and the tn attacks are gone. I will I had this done in the first place. My attacks are gone...........but not this horrible numb/pain face 24/7. Please get the book Striking Back and read it and then you can make your decision. I also found that the neurosurgeon get paid 4 times more money to do the gamma knife than the mvd...........go figure.

Doodle bug7
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Doodle bug7
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My story, my Hope.
I had an MVD that failedI was first admitted to the hospital here in my town. I was on a morphine pump for nine days, then transferred to Kansas city.I have no memory of being in the hospital those nine days. My daughter told me much later that I talked to people that were not there and saw ants fly by in little groups.
Directly after my surgery, while I was in ICU, I had a TN pain. I asked about it and was told not to worry about it, that sometimes it takes a few days. I Knew right then that it didn't work. A couple days later I was released and we went home. It didn't take long before the TN pain returned with a vengeance. The lightning jolts continued in the worst way. I lay on an air mattress on the floor. I wouldn't talk, I couldn't eat, and I was scared to death not knowing if this was all there was now for my life. I lost weight, became dehydrated. I wanted to cry, I wanted to scream, but the fear held me back. I had layed on the opposite side of the pain for so long my ear actually had developed a sore. This was truely the darkest days I had ever known. I hated to move and I would wait as long as I could. The neurosurgeon had talked to my husband and suggested a balloon decompression. They put a needle in your cheek into the base of the skull and try to destroy the trigeminal nerve. Over the next two weeks, I had three of these surgeries and to no avail. The hope I had held onto disappeared quickly and turned into despair.
My husband would sit by my side, hold my hand and pray for us to have the courage and strength to continue trying. I felt like I was the only one in the world who had this tormenting pain.
The last option that we knew we had to try was Mayo clinic in Rochester
Minnesota. We headed right for the emergency room at St.Marys hospital,which is a part of Mayo. I was quickly admitted and had two or three nurses and Doctors surrounding me. Two days later I was taken to surgery
again. The neurosurgeon was one of the best in the world. He explained to me that at this time, since everything failed so far that he was going to partially cut the nerve. He opened my head in the same place as before. When I got out of surgery the pain was very intense and had excellerated the pain to new heights. I was taken to the pain unit where I was watched closely. The nurse kept reminding me to breath as the drug I was getting slowed everything down. I didn't care if I breathed or not at this point.
They took me back to surgery again three days later as obviously That surgery had also failed. The Doctor explained before hand that he was going to sever the nerve and it would make that side of my face numb. It was hard for me to comprehend anything at that time. He opened my head in the same place as before. The lightning jolts stopped. I knew that this was the last surgery that could be done.
I spent three weeks at Mayo clinic. The trigeminal pain had ceased to be
but it was replaced by another pain.
You know I couldn't say the word TN.for several years. It had taken so much from me. I simply hated it all and was very bitter. The pain I have now is not a scarey pain like TN. but it is constant. I didn't even know it had a name.
One day I went to the computer and typed in T-r-i-g-e-m-i-n-a-l, almost closing my eyes.Somewhere in there I read about my new pain and it had a name. Anesthesia Delorosa. I found neuro talk and a brand new world opened
up. This is how I met Burntmarshmellow and found out she has the same pain
that I have. I'm now writing to others and found a lot of people that are suffering from pain but are so positive. I have learned to let go of my bitterness and found I am not the only person that has TN or TN pain.I truely believe that when you see your Neurosurgeon, he will direct you down your own path with courage and faith. Meanwhile, you have many, many friends
at neuroTalk. You know friends are like stars, you don't always see them, but you know they are there. Everyone has a story.
Truely a believer, D. Bug7
__________________

my only options
1 --- to have a morphine pump screwed into back of my skull
2--- be first to try a neuro stim implant
I chose number 2 as morphine didnt help when injected threw i.v. ..why would I want a pump in back of my head. I have had my neuro stim implant since July of 2002
it SAVED my life it is a God send. it is great, you try it before they implant it to see if it will help ..unlike m.v.d. or gamma... you cant try those to see if it will help... I have heard some sad failures of both m.v.d. and gamma. but also just as many good happy endings as well.
dont rush into anything and get as much info as you can..then decide what is best for you. we are all different .
I wish you tons of the best in finding the right thing for you to control your pain.
PEACE
BMW

Thank you all for your stories. I will look into that book Striking Back. I am going back to the Neurologist the end of this month. He started decreasing the medication three weeks ago. The good news is that the pain hasn't come back. Howver, I still have persistent ringing in my ears. Taking Omega-3's every day has seemed to help.

I'm not ready for neither the gamma nor the MVD. I'm not sure though if willing my TN away is going to prove to be effective.

Thanks again. Will post soon.