I am 53 and have had TN for a little over 2 yrs Gabapentin is not working just started Trileptal not sure how it is going to work I have been having some really bad pain. I am contemplating having Gamma knife or MVD I know I have read that MVD may not work as well after Gamma knife because of the Damage Gamma Knife does. I am kind of against the Gamma knife because of the damage if may cause and then not work for very long. My husband is kind of against MVD but it is not up to him he is not the one in the pain.
Does anyone have any wisdon on the wether I should try gamma knife or MVD
I had gamma knife in may of 12. It didn’t really help and about 3 months out I had attacks that were 10 times worse. They did my mvd Dec 6 12. Told me the reason it was worse was because of the gamma knife scar tissue. Not all gk patients get it, 1 in like 7000 I am told. Gk was soooo much easier than the mvd. Less side effects it would have been awesome if it worked. A year later I still have pulling numbness where my muscles are knitting themselves back together. Drivesme batty but the TN attacks were worse. I wish you the best.
My personal decision is to have the MVD when the time comes and it may be coming soon. I researched all procedures and their success rates and I read the same thing you did about Gamma Knife. I am going for the big one when I do it!
Do your research, evaluate your health on whether you are up for surgery, for me, I elected the MVD surgery which I
had on September, 17 2013, as the better choice. Pontentially longer relief with damaging the nerve further. I know the compression of the nerve is gone, and the number of TN events has dropped, but I had some complications that at 8 weeks have finally resolved itself ( I had a reaction to the teflon pads) Only you can make the decision yourself, Good Luck
Do your research, evaluate your health on whether you are up for surgery, for me, I elected the MVD surgery which I
had on September, 17 2013, as the better choice. Pontentially longer relief with damaging the nerve further. I know the compression of the nerve is gone, and the number of TN events has dropped, but I had some complications that at 8 weeks have finally resolved itself ( I had a reaction to the teflon pads) Only you can make the decision yourself, Good Luck
John
If you do not mind what happened about the teflon pad reaction
Kath, it’s such a personal decision…(I know you know)…
I chose MVD for the reason you mentioned above…it’s the only procedure if done by an experienced NS that does not cause damage to the nerve. Its the most invasive, and there are risks involved…but for me, with refractory TN it was my best choice.
I have no regrets, go with your gut and learn as much as you can! Also consult with more than one NS!
(( hugs )) Mimi
Do your research, evaluate your health on whether you are up for surgery, for me, I elected the MVD surgery which I
had on September, 17 2013, as the better choice. Pontentially longer relief with damaging the nerve further. I know the compression of the nerve is gone, and the number of TN events has dropped, but I had some complications that at 8 weeks have finally resolved itself ( I had a reaction to the teflon pads) Only you can make the decision yourself, Good Luck
John
If you do not mind what happened about the teflon pad reaction
I think his Teflon pads were initially rejecting…but really rare.!
I had headaches and fever every night for over 7-1/2 weeks as a reaction to the pads after a number of tests and a second hospital stay and 10 days of IV antibotics they determine I had Chemical Meningitis from the teflon pads, the headaches and fever have subsided at this point It is very rare, less then 10% of folks that have a MVD have such an reaction, My seemed to last longer then most according to my surgeons. Other then that, the surgery were much better then I thought it would.
John
KATTHOMPSON4 said:
John said:
Do your research, evaluate your health on whether you are up for surgery, for me, I elected the MVD surgery which I
had on September, 17 2013, as the better choice. Pontentially longer relief with damaging the nerve further. I know the compression of the nerve is gone, and the number of TN events has dropped, but I had some complications that at 8 weeks have finally resolved itself ( I had a reaction to the teflon pads) Only you can make the decision yourself, Good Luck
John
If you do not mind what happened about the teflon pad reaction
i had gamma knife almost two years ago and would not recommend it. Caused more pain than ever and increased numbness--it is after all a destructive procedure.
I had the gamma knife and it has been very good for me. I actually had it twice. The first time it didn't work, the second time it was/is great. My meds are half of what they used ot be, and while i still have flareups from time to time it has been extremely positive. I have learned to live within my limitations, and grow wiht them. My grandma used to say "There is more than one way to skin a cat. Don't miss it! "
I think you have to do what’s best for you…that being said I had CyberKnife and loved it initially…med and pain free 6/2011…for 6 months. Then numbness and worse pain effecting all 3 branches. On Monday I go to find out about MVD. I hope it might work but I know your concern also because now the nerve is damaged after the CK procedure. What to do? I asked that question here a few weeks ago and everyone is so great and supportive! Everyone is different and unfortunately we are dealing with something that there are no cut and dry answers too. Like if you have gallbladder pain it comes out end of story. I wish you luck! I let you know my outcome after my appointment Monday. He is supposed to be one of the best here on the Eastcoast. And as KC dancer kc says that could make all the difference.