Hello, I would like to know if someone can tell me about their experiences after a gamma knife procedure for tn? thanks very much.....dave w.
Hi Dave,I had gamma knife July 18th.I had just been through the worst episodes of TN pain ever.Luckily it had settled down a bit for the drs.visit and procedure.After the procedure I still had pain,but knew something was different.It took 9 weeks for the pain to go away and now I am off the horrible carbamazepine and pain free.My tn would always go into remission,but this last bout I really didn’t feel it was going to leave.i still have fear it will return,but I am trying to enjoy every pain free day.Hope this helps.
Hi Don , thanks for the fast reply to my question. Your story sounds very similar to mine.I am having my Gamma knife procedure next week.Yes I am also tired of taking carbazepine,although it did take my pain away.I will keep a supply of carbamazepine on hand just in case.My TN always would also go into remission after the season changes,but this time it did not.I am kind of tired all the time on carbamazepine.(800 mg per day).Well anyways,it sounds like the Gamma knife worked out for you if you are off the medication....Thanks again Don..take care and good luck.
The carbamazepine only made my symptoms slightly better.Never took the pain away.The feeling here in general is gamma knife isn’t the best treatment.I had a avm that didnt allow for mvd surgery.So far im very happy with my Gamma procedure.Dr. Desolems in Dallas did mine.Best of luck with your procedure.Give it time afterwards…Mine took a bit longer than they said,but it did work.D
Don said:
The carbamazepine only made my symptoms slightly better.Never took the pain away.The feeling here in general is gamma knife isn't the best treatment.I had a avm that didnt allow for mvd surgery.So far im very happy with my Gamma procedure.Dr. Desolems in Dallas did mine.Best of luck with your procedure.Give it time afterwards..Mine took a bit longer than they said,but it did work.D
Dave W. said: Hi again Don. I was told by my doctor that it will take time for the procedure to take effect.Glad to hear it worked for you
Hi Dave I had Cyberknife surgery in 7/2011. I had been taking carbamazepine before that and still was having a lot of bad side effects from the medicine and still having pain. I decided to try the less evasive approach to treatment. I was afraid of MVD. I had great success within the first several weeks and was off the medicine and pain free after 1 month Hoooray! But about 6 months later i started to have numbness in my tongue like a shot of Novocaine. The numbness progressed and encompassed the whole right side of my head...which was ok they told me it could happen and that it would most likely be permanent. I was ok with that still no pain and no meds! But then it came back and not just in the area I had it before but now all different areas of the right side. It does feel different because I am "numb" but I can still feel it and I am taking Tegritol now which helps. I am now considering MVD but Idk. I think my situation is unusual. I think overall it was worth it because even to be pain and med free is so nice!
Thank you for the reply to my question Kristin.I guess I will just have to wait and see what happens in my case.I hope things get better for you soon.Thanks again,and good luck
Kristin said:
Hi Dave I had Cyberknife surgery in 7/2011. I had been taking carbamazepine before that and still was having a lot of bad side effects from the medicine and still having pain. I decided to try the less evasive approach to treatment. I was afraid of MVD. I had great success within the first several weeks and was off the medicine and pain free after 1 month Hoooray! But about 6 months later i started to have numbness in my tongue like a shot of Novocaine. The numbness progressed and encompassed the whole right side of my head...which was ok they told me it could happen and that it would most likely be permanent. I was ok with that still no pain and no meds! But then it came back and not just in the area I had it before but now all different areas of the right side. It does feel different because I am "numb" but I can still feel it and I am taking Tegritol now which helps. I am now considering MVD but Idk. I think my situation is unusual. I think overall it was worth it because even to be pain and med free is so nice!
Good luck Dave! You are right everyone’s experience is going to be different. I wish you the best. 