Hi all. I am scheduled to have gamma knife next week and I am having second thoughts. You see the pain has been very well managed for 3 1/2 weeks on meds. This is the first time that I have had success with meds. I was scheduled to meet with the surgeon before the meds really kicked in. Now I keep wondering should I have the surgery or postpone it. Any advice?
Hi Sharon, I had a gamma knife treatment right after I was first diagnosed with TN and it did nothing to help me but I was able to stay on the meds before, during and after the procedure. Some have great success with the gamma knife I would recommend giving it a try, you might just be one of the lucky ones…
Sharon,
I haven’t had gamma knife but talk to the surgeon anyway. Some have success with some treatments while others don’t . But I think if my pain was well managed, then I would probably not try a procedure. The reason I haven’t had the second MVD is because I am doing fairly well. But then the confusion sets in at times and I start to think that maybe I should have listened to the surgeon and had the MVD. I don’t think any of us has the right answer.
Liz
Thanks Vic! Everything about TN is confusing. The unpredictability is driving me crazy!!!
Vic Maidhof said:
Hi Sharon, I had a gamma knife treatment right after I was first diagnosed with TN and it did nothing to help me but I was able to stay on the meds before, during and after the procedure. Some have great success with the gamma knife I would recommend giving it a try, you might just be one of the lucky ones…
Thanks Liz! I am really struggling with this because I am so stable right now but this is the first time I have been stable since diagnosis 6 months ago. I appreciate the advice and support. It helps to know that I am not alone.
Liz K. said:
Sharon,
I haven’t had gamma knife but talk to the surgeon anyway. Some have success with some treatments while others don’t . But I think if my pain was well managed, then I would probably not try a procedure. The reason I haven’t had the second MVD is because I am doing fairly well. But then the confusion sets in at times and I start to think that maybe I should have listened to the surgeon and had the MVD. I don’t think any of us has the right answer.
Liz
Thanks Sabrina! I have decided to go ahead with the surgery. The meds are failing a little and I feel like they will not last much longer. I have already been on everything and my neurologist felt like this combo was the last best chance before surgery. Thanks for your advise. It really helps to know that I’m not alone with this dreadful condition. Hope you have a painfree day!!!
Sabrina Ellis said:
Hi Sharon,If you are not sure about having the gamma knife at this time I would wait.If the medications quit working and you can’t find other meds that will help,you can always have the gamma knife then.However the choice is yours and whatever you decide to do,I hope you get the pain relief you need.I will be thinking about you during this difficult time.
You have my compassion Sharon. I also was free of pain several weeks before my MVD. I was having lots of second thoughts. The only thing that made me go through with it was about five days before my surgery I decided to go out and exercise like I did before the TN just to see what would happen. That night I was in terrible pain and had to take tegretol again. I felt like that was a sign telling me to go ahead and go through with the surgery. Sorry to to say, I am still not better (the way I thought I would be if I had surgery). Maybe I would be worse if I hadn’t had the surgery? I don’t know. That’s one thing that is so difficult with this condition…we feel good for days, maybe weeks, and then the pain strikes again. I’m sorry I don’t know what to advise, but I will be thinking about you and I will say a prayer for you…follow your gut feeling…go somewhere where you are all alone and just ask for guidance, be silent and listen, trust your gut feeling. Good luck Sharon.
Thank you Jamie Leigh! Your advice helped me alot. I have been second guessing my decision and getting more confused. I will do more soul searching and praying to come up with the answer. Hope you are enjoying some relief right now. Thanks!
jamie leigh said:
You have my compassion Sharon. I also was free of pain several weeks before my MVD. I was having lots of second thoughts. The only thing that made me go through with it was about five days before my surgery I decided to go out and exercise like I did before the TN just to see what would happen. That night I was in terrible pain and had to take tegretol again. I felt like that was a sign telling me to go ahead and go through with the surgery. Sorry to to say, I am still not better (the way I thought I would be if I had surgery). Maybe I would be worse if I hadn’t had the surgery? I don’t know. That’s one thing that is so difficult with this condition…we feel good for days, maybe weeks, and then the pain strikes again. I’m sorry I don’t know what to advise, but I will be thinking about you and I will say a prayer for you…follow your gut feeling…go somewhere where you are all alone and just ask for guidance, be silent and listen, trust your gut feeling. Good luck Sharon.