Friends, has anyone had MVD surgery or gamma knife radiation treatment twice? I am currently having a very bad relapse of my TN and will need to make a decision soon about what route I'm going to try. I had surgery in 2002 (at 22 years old) and gamma knife in 2003. I also had a tumor removed during my surgery. My recovery was terrible and involved a great deal of issues. For the last 10 years I have had a few returns of my TN and in 2010 I had minor surgery to cut two of the nerves in my face.
I am trying to decide what my next step is. I am terrified of having surgery again and the recovery that comes with it. The thought of putting my life on hold for months seems impossible but I can't continue with the pain I'm in. I have heard mixed information about having the gamma knife done twice and worry about the lack of knowledge on the long-term effects.
I am grateful for any advice you may have. I'm scared about going through all this again.
Imnsorr to eat all you have been through in the past and the pain returning to you now I hVe not yet had any surgical procedures done but MV has the highest success rate from the hour of research I have done … If u have had the other procedure before and pain has returned I would not consider it just my opinion though … Wish u the best of luck in whatever descision u make
Hi, Nicola — In 2002, my stint w/ TN began. In 04 and 05 I had gamma knife, in which both failed. In 06, I had MVD w/ Dr. Carson at Johns Hopkins and the surgery took the harsh, ear stabbing pain away. But what he could not change was the lower pain level, ATN pain along with anesthesia delorosa experience that comes and goes. It began after the first GK failed. If I had it to do again, I would not have done either gamma knife surgeries. I was 38 at the time of the first GK and with little ones were too small to tend to themselves, I felt the risk of GK was not as bad as the risk of MVD. Plus, we read a LOT of botched MVD surgery notes on the net and were really scared. The GK did not scare my hubby and I as much, plus the small amount of down time seemed doable. In hindsight, the MVD first probably would have been all I had to do, since I was in the right hands with Dr. Carson. It is a very specific, individual choice though, and when we are in severe pain, it's not the best time to make such life-altering decisions. Is there a way you could get the pain down to be able to think w/o it interfering? It seems we either have pain or meds to interfere with our thoughts, so we can't win for loosing at times. Is there someone you trust in your life who is able to think objectively about this? I always think that if I had been older, way older like 70s or 80s, then my nerve may not have grown back as a damaged nerve, but would've stayed deadened and non-painful. Now I realize the younger you are, the more of a chance you have that the nerve will regrow with the damage in place. If you'd like to chat more, please msg me. I pray you find the perfect course for your situation. I also hope you're out of this dreadful pain soon. Take good care, LyndaS
LyndaS, I am actually going to Johns Hopkins this Thursday to meet with Dr. Lim and possibly Dr. Carson. I will be taking you up on your offer of chatting more and will send you a message this afternoon, Thank You so much for your offer!!!
My best to you as well, I look forward to talking more. Nicola