If you have had Gamma Knife please share your story with me. I have an appointment with my second neurosurgeon tomorrow and need to make a decision if I want it or not. I have only had TN for 5 months, It has been really really bad. i have not responded to any meds until now. I take 10 mg Baclofen 3x a day and 100mg of Lamictal 1x a day. I have not had much pain at all in two weeks since movin to 100mg. I am confused and really scared. Since meds are working, do i even need this? Please share you experiences with me and ny advice.
Vic Maidhof said:
Hi Sharon, I am sorry to hear you have TN but it is good that the meds are working…I have had TN for four years and In the beginning meds were doing very little to stop the pain spasms on the left side of my face and in my teeth on the same side…I elected to have Gamma Knife on the recommendation of a neurosurgeon who said it was less invasive…I an MRI which showed nothing so they had to take a guess on where to point the gamma knife. They fasten a helmet on your head that is full of tiny holes…that was the pain part for me…the screws that hold the helmet on hurt…after only about 20minutes under the machine the “surgery” is complete. My insurance was billed something like $ 50,000 dollars for this treatment…I was told that it could take up to six months for any results…that six months was the worst time of my life as I was racked with pain and out of commission. After six months I was able to have the same neurosurgeon perform a balloon compression with glycerol injection…the pain was gone immediately and all I had to deal with was then was the left side of my face was numbed and prickly…but the operation only relieved pain for 13 months…since then I have had three more balloon treatments the last one four months ago but now the pain is coming back. I am back eating tegretol…only 4 to 6 mgs a day right now but have been up to 4 thousand and even higher…
Now I am scheduled to go in for real brain surgery…the MVD…on July 16…Im worried about this because the when I asked the surgeon what would happen if they didnt find a fused vessel on a nerve he said they would cut the nerve…not a good thing Im told…I have met no one who has had pain relieved from the gamma knife…there may be someone on this site or out there somewhere but I have yet to meet one that has TN…but I have only been on this site for a week…I hope this information helps you in your battle and I will be your friend of yours on this site…Vic in San Diego
Thanks for your story Vic. I am trying to gather as much information as possible good and bad experiences to make my decision. Good luck with your MVD and please stay on touch!
Vic Maidhof said:
Vic Maidhof said:Hi Sharon, I am sorry to hear you have TN but it is good that the meds are working…I have had TN for four years and In the beginning meds were doing very little to stop the pain spasms on the left side of my face and in my teeth on the same side…I elected to have Gamma Knife on the recommendation of a neurosurgeon who said it was less invasive…I an MRI which showed nothing so they had to take a guess on where to point the gamma knife. They fasten a helmet on your head that is full of tiny holes…that was the pain part for me…the screws that hold the helmet on hurt…after only about 20minutes under the machine the “surgery” is complete. My insurance was billed something like $ 50,000 dollars for this treatment…I was told that it could take up to six months for any results…that six months was the worst time of my life as I was racked with pain and out of commission. After six months I was able to have the same neurosurgeon perform a balloon compression with glycerol injection…the pain was gone immediately and all I had to deal with was then was the left side of my face was numbed and prickly…but the operation only relieved pain for 13 months…since then I have had three more balloon treatments the last one four months ago but now the pain is coming back. I am back eating tegretol…only 4 to 6 mgs a day right now but have been up to 4 thousand and even higher…
Now I am scheduled to go in for real brain surgery…the MVD…on July 16…Im worried about this because the when I asked the surgeon what would happen if they didnt find a fused vessel on a nerve he said they would cut the nerve…not a good thing Im told…I have met no one who has had pain relieved from the gamma knife…there may be someone on this site or out there somewhere but I have yet to meet one that has TN…but I have only been on this site for a week…I hope this information helps you in your battle and I will be your friend of yours on this site…Vic in San Diego