Just wondering if there is anybody who has recently done a Gamma Knife procedure? I was told that if they can't see any vascular compression from the MRI, that this might be the right thing to do. Right now I am scheduled for the GK on June 6, 2014 ..... Sure would like to hear some good news about the GK, or if I should bail out. I have to do something! It's gone from T1 on to T2 and have worked through several of the medications. I just want my life back. Sandi.
I waited a long time to do either one. Wish I had not done the Gamma Knife. I feel it set me up for failed MVD. The MVD went well, but the Trigeminal nerve was so badly damaged from the GK that now I'm left with Anesthesia Dolorosa. There are no drugs to help with it. I'm miserable now. At least with the TN I could take drugs for relief. I would think twice.
Hi. I had G K over two tears ago. Have been virtually pain free until I got stuck in frigid snowstorm this winter. If I hadn’t had that I would have been great. I was not a candidate for M V D. Also I did not necessarily feel good about someone messing around with my brain. I am just over a dose of therapeutic carbamazepine which is a lot less medication than prior. I think G K is good. I know they press for M V D but if you have classic TN and atypical. Some neuros may not perform the M V D. It is a chance. I waited 5 years. Suffered a lot. Please think what would be best for you. Sometimes there is no wrong answer
Wishing you all the best
Chippy
I was pain free for 6 months Then back with a vengeance. I have had TN since 1999. I waited 9 yrs. then had Gamma Knife. Thought it was great. Then after 6 mos. Bang, surprise. So I waited 2 more yrs. Had MVD>I'm pain free from the TN, but like I said I suffer worse with Anesthesia Dolorosa. I think I waited way to long to have either. I think the nerve was too damaged long before I had any procedure. So anything is risky.
I have had the GK and did it help? I feel that if I hadn't had it my pain may be much worse. I have MS and MS induced TN. I think that if you can do the Gamma Knife then I would do it. Anything to relieve some of the pain right. Good Luck.
Sundibell,
When my left side TN2 became med resistant I researched and chose MVD. ( I personally didn’t want further damage to the trigeminal nerve with the other procedures)
NO compressions were ever found on any of my mris over a 10 year span. ( I have bilateral TN)
During my MVD over a year ago, 3 major compressions were found.
It’s a personal decision, the only thing I can add is that studies have shown that patients who do GK, or any of the other procedures first, have lesser chances of success with MVD.
But as some have stated GK has helped them!
I suggest research and take your time making the right decision for you. Please don’t rush into something out of desperation of the pain.
I wish you the best whatever you choose!
(( hugs)) Mimi
Thanks for everyone's input. I really appreciate it. Im sorry everyone has to suffer with this Tn stuff.I hope for all of us to have complete healing from pain soon. Im not sure what road I will take yet. Mimi do you still suffer? Did you finally get relief. Any input is totally welcome . Im open hopping for pain free days ahead
Sandi