I really need help, some suggestions. After reading my short story version, what do you believe to be the better choice? I know anything we do is a gamble but????
I can't move up much more on the medicine chain. I've had two mvd's and the surgeons say, no more surgeries. One surgeon wants to do Gamma Knife (he is an expert in Gamma Knife) and also did one of my MVDs and the other, Glycerol Rhizotomy. I don't know why he didn't say, RF rhizotomy but maybe because he wasn't in the room long enough to ask him. He said no to the Gamma Knife. Please help!
I already decided against the glycerol r. However, I don't know what to do. I have to do something soon, before it comes back and I do my own surgery..
Hello. It’s so hopeless sometimes isn’t it. I have type2b. I had a vessel embedded in my nerve in six places. Had an m e…had a spinal fluid leak…was in the hospital with a drain for 3 weeks…then had another mvd. I was in some sort of remission for a year and a half. I had twins then right before their 1st birthday my TN came back with a vengeance. It’s been 2 years now of medicines and 3 radio frequency Rhizolosis. Each time initially it’s ok until the swelling goes down then back again. Last time my eye was permanently damaged and I can no longer feel my eye or eye socket. I am told I can have no more. Last week my surgeon said there really isn’t anything more he can do. I feel for you so much. I am going to try and try as many combinations of meds I can…try as much pain medication to at least take the edge off…and hope that stem cell therapy will stop being so taboo in the us and maybe give some of us some hope.
Thank you, Amynay for your response. It really sucks, doesn't it! I can't imagine having this with two babies! The meds are really killing me. I'm not even sure if I answered you back or not. LOL My eyes have been seeing double so bad that I haven't even been able to do research. I hope your having a good day!
Get another opinion- I was told no more surgery after MVD in 2007, Had Gaffa Knife 2009, Another surgery in 2011 to correct the problems (a big hole in my head and clip pinching a nerve) with MVD and to cut the Occipital never. So don'tbelieve everything one doctor tells you. Do your own home work and get other professional opinions.