Please talk to me about your thoughts on gamma knife. I went to UVA this week and saw Dr. Jason Shehan and was told I was a candidate for the surgery. I have lots of eye pain and numbness, sore, achy pain all the time and I am so scare. My husband is pushing for the surgery and I know he is tired of me. I would like to hear from anyone who has had the surgery or anyone, like me, who is thinking about it.
If you'll send me a private email via ■■■■■■■■■■■■■■■■■■■, I'll send you back the practice standard for Gamma Knife, published by the International Association for Radio Surgery. GK has an initial success rate against Type I TN of about 80-90%. But about half of all those who have the procedure have a recurrence of pain within the first three years. And there are further recurrences beyond three years. If you have the option and can find a neurosurgeon who has done a good many MVD operations, that procedure is the gold standard against which all others are compared. Persistence rates for Type I TN are much better than GK: about 70% of all MVDs eliminate or significantly improve pain for at least 12 years.
Type II is a tougher beaste to treat by either means. There are few statistics for GK, and for MVD, the stats are daunting: about 50% get pain improvement or relief for at least 5 years.
Feel free to follow up here or at my hotmail gateway. I cannot post the treatment standard because it is copyrighted.
Regards, Red
I underwent GM on 2/1 at Columbia Pres Hospital in NYC. I'm told that positive results could take 6-8 months and would only be done a total of twice if I got no results the first time. It was a same day procedure. After the frame was afixed to my skull with 4 bolts, I underwent MRI and then the GM machne. The GM machine was very quiet. I returned to work the next day. I have had no side effects. I did have some nerve impingment pain on my skull, like if I touch above my eye the top of my head felt a slight "bolt of electricty", this phased out. My treatment team at Columbia likes the least invasive approach first before considering an MVD. If your ins co will cover it it may be a great option for you. My husband really wanted me to have this too, he even called and set everything up!!!! Can't hurt, may help. I have months to go....trying to be patient. My ins co was billed $90,000 give or take.
This sounds very familiar to what they told me would happen, except I would have to undergo a physical exam before the actual procedure. I have so much pain in my eye and I am afraid of more after surgery. A doctor at the Unv. of Pitts. told me that he would not consider me a candidate for MVD because of my stroke. The cost sounds unreal. I'm in the process with my insurance co. now.
I was seriously considering Gamma Knife until I consulted with a Radiation Oncologist who did long term studies on people who had Gamma Knife surgery for TGN. It usually works, but over time, the pain comes back - sometimes as soon as 3 years. 7 years seemed to be the most anyone reported being pain free, but by that time, the majority of people were in enough pain to consider doing it again. I believe he said that there is a limit of two times, but I was so disappointed by the longterm prognosis that I wasn't really listening at that point.
I personally have decided to hold off on GK until I can no longer tolerate the Tegretol side effects. I hope that there may be something new on the horizon by that time.
Mary L.
Red,
Did you ever receive my email address for the practise standards of Gamma Knife?
Don't believe I saw it, Dianna... Please try again at ■■■■■■■■■■■■■■■■■■■
Regards, Red