I am scheduled for this procedure on Sept 9. I was wondering if any of you has any experience with it?
I had MVD surgery on Oct 24, 2014. It was successful but now I'm having pain in a different area. I had relief for a few months and it was wonderful but then the pain returned in a slightly different place. The docs believe it is a sign of my primary Sjorgren's Syndrome getting worse. :(
I have done research about the Gamma Knife but as always, I find your input to be the most helpful.
The persistence of positive outcomes with Gamma Knife isn't particularly good. Even with classic trigeminal neuralgia, about half of all successful GK procedure patients get recurrent pain within three years. I'm quite surprised to hear that your doctors would recommend Gamma Knife as a response to progression of Sjorgren's Syndrome, which is an auto-immune disorder that produces systemic inflammation. How is he going to select a target zone? Is the pain occurring in the same branch of the nerve where MVD was used, or on the same side of your face? If so, then I would think that a second MVD might have a higher chance of positive outcomes.
I would recommend getting a second opinion before going forward with Gamma Knife.
Hi Bels. I agree with Red. I unfortunately had Gamma Knife March 2014 and have been in different types of pain ever since. I still get my original TN pain at the same site but on top of that I get Glossopharyngeal Neuralgia pain, and coming and going of pins and needles, burning, and stabbing anywhere across TN side of face. Sorry to be negative and I have heard of it helping people so you need to have a good think and a second opinion. Mary
Hi Bels,I also agree with Red and Mary,I also had gamma knife in 2004 and am still paying for it,most real bad side effects disapeared after a FEW YEARS.My mouth on the right (my bad side) is still numb and I now have GN, for me it and the mvd both have made things way worse. I had great tn drs. Dr. Casey and Dr. Copeland (who has since passed,and is greatly missed) I’m not trying to scare you, it does help some,we are all so different,what works for one may not work for another.So keep reading and doing your own research and you will come to the answer which will be best for you.My theory (I’m NOBODY) the very least invasive way possible,the trigeminal nerve, for whatever reason is already fired up or we wouldn’t have the pain we have. I found a cream (GALLIXA) it has been amazing for me. It may not be as good as I would like yet,I can tell with all this rainy weather we have been having that I am only getting better and better! I have a life again! Praying you find the answers you are looking for. Have a blessed day, dawn