Gamma Knife Experiences..radiation exposure

[albot]

Has anyone had the gamma knife surgery and in doing so worried about radiation exposure? I know it is extremely high in order to destroy the nerve. I would love to know how people deal with and approach the fact even though the radiation is highly targeted, it is still approaching high theapuetic levels. I have pain in both sides of the trigeminal nerve and may need one dose to each side. The idea of that much radiation freaks me out to point I am consdiering Rhizotomy instead.

Thanks!
Alex

[MaryAnn15]

Please reconsider the gamma knife surgery. How much radiation will you be exposed to and how much is safe? Why not try acupuncture?I also have TN and feel your pain. I went to a strict diet with less processed foods and no artificial sweeteners since May of this year. I have been doing very well since then. Good luck to you in your decision.

[Kagey]

Dear Alex,

You should be scared to death.  My mother had gamma knife surgery for TN in April.  The day after her surgery she started vomiting.  In talking with the neorosurgeon, he said she must have the flu.    Days later she was as still sick as a dog and had to go into the hospital with severe dehydration.  Within a couple of weeks, all of her hair had fallen out.  We were told only a small amount around the targeted area would probably fall out.  Her vision was blurry and she was occasionally seeing double.  The doctors insisted it wasn't from anything pertaining to the Gamma Knife.  Three months later, this past July, we were in a meeting with the hospital administrators and the doctors.  They had informed us that my mother was the victim of a tragic mistake.  She and 2 other patients were the victims of a software glitch in the machine and they recieved mega doses of radiation.  They told her she could go blind and senile.

[nancy99n]

This link goes through a lot of the available procedures.  

http://www.umanitoba.ca/centres/cranial_nerves/trigeminal_neuralgia/manuscript/index.html

A good neurosurgeon or facial pain specialist should be able to give you information about all the procedures available and what would be recommended in your case.

Another good site is http://www.fpa-support.org/ -- the Trigeminal Neuralgia Association.  They sell a book on their site called "Striking Back" that has a lot of good information.

Best of luck!
Nancy

[albot]

Hi Nancy. Thanks for the reply. So I assume the procedures would be Rhizotomy, MVD, Gamma Knife, but was wondering what the other two were. I have heard of ballon compression. I also have heard of peripheral nerve stimulation. Thanks again!

Alex

[nancy99n]

Alex,

I had a Gamma Knife at the end of April.  In talking to the neurosurgeon prior to deciding on the Gamma Knife, I asked him what the risks were.  He told me that there is a very small chance of a brain tumor.  Personally, with the amount of pain I experienced with TN and the fact that the drugs used to control that pain could adversely affect my kidneys over time, the drowsiness, nausea, and general lack of concentration that affected my ability to work -- I was willing to take the risk.

There is risk in all of these procedures.

I have never had a Rhizotomy, but I have also read the posts on the Trigeminal Nueralgia Association website, and numerous people there have mentioned that the Rhizotomy only works for about 6 months and then your pain comes back.

In comparison, 80% of the people who have a Gamma Knife are pain free.  20% have the nerve re-generate in 5 years and relapse.

There are 5 different procedures.  You need to do research and discuss with the doctor what the best procedure is for you.  If you have a blood vessel pressing on the nerve, the Gamma Knife will probably not help -- in those situations, usually a balloon procedure or an MVD is the better option.  

Best of luck in becoming pain free!
Nancy