hi has anyone heard of the gamma knife the pills are not working too well and the cold weather is killing me so the dr. wanted to try the gamma knife has anyone tried it or heard about it does it work or does it last?
go to the groups tab above -- will show you all groups -- click on the one that says gamma knife or cyber knife
If you ever want to consider MVD surgery - the above procedure will lessen your % of success for that .
Dee, I re-posted my procedure depression thread that talks about my experience with GKRS, if you would like to read it.
I was pain free for three years, but only from the intense pain. Min
hi where is it I am new to this site and where do I go to see it but what or just tell me what happen after if u dont mind after 3 years or if I should do it at all I value your advice since u been through it already..thanks dee
You can go to form/ discussions and type in Procedure depression in the search box.... and it will pull up my discusion and all the responses.
It was real hard for me after the pain came back. I was only pain free from the intense pain for 3 years. I stil had the dull aching pain... If you do this procedure it pretty much keeps you from ever having an MVD in the future because the Gamma rays cause a big muckus in there... and it can NOT work as well. There are many on here who it didn't work for. With MVD-- If you present with Type 1 symptoms first mainly, and then you have type II symptoms you can still have reasonably good results. So it's not just for Type I people only. Something to check into.
I did get numbness on the right side of my tongue from the surgery and my ear from it. A year later I developed no taste on that side too. So I do have some lasting side effects from GKRS.
I never would have been eligible for MVD so in my case no harm no foul, I guess.... But I am at a slightly increased risk for brain cancer at an older age as well for having this surgery too.
You really have to decide what is best and weigh the odds. I was one of the lucky ones who did get relief for three years.
Not everyone is that lucky, unfortunately.
Min
Had Gamma Knife last March. The procedure changed my life. It is now January and the stress of Christmas and the cold brought on an episode. Not so bad though. I am taking 600 mg of carbamezapine and am presently in a holding pattern. I felt so wonderful that I forgot that it was lying in wait. I failed to protect myself from the cold and began to feel tiny electrical snaps along my cheeks and some nasty ear pain. I honestly felt that I was cured. I still have the option to have it done again at 60 percent of the original treatment. I have some numbness in my chin, but gladly take it for being able to function again in areas that meant so much to me. So I am now back on this site that gave me so much hope. Wishing all a Happy New Year. Also much love and empathy to all those that suffer and in spite of that suffering reached out to me when I felt so frightened and alone. You were the best and biggest blessing to me.
I had GammaKnife in mid July and am blessedly pain free now with no meds for tn.I have some tingling /numbness around the eye and i know it's the nerve or the TN trying to attack,but i'm good.I'm so happy i did it even if it doesn't last past tomorrow.Research tells me it can range from not working at all to lasting 10 + years.Others are right in saying it is a nerve damaging procedure and will reduce the good outcome of surgery later.I was all set for MVD surgery until they found a AVM close to the area which they were afraid to disturb.I first had Cyberknife to treat the AVM and when my pain returned (and it was terrible and not receding)i went for the Gamma knife.Good luck to you!
Don,
my husband is considering Gamma Knife. His trigeminal nerve is touching his basilar artery...is that what you are referring to by "AVM"?
Don said:
I had GammaKnife in mid July and am blessedly pain free now with no meds for tn.I have some tingling /numbness around the eye and i know it's the nerve or the TN trying to attack,but i'm good.I'm so happy i did it even if it doesn't last past tomorrow.Research tells me it can range from not working at all to lasting 10 + years.Others are right in saying it is a nerve damaging procedure and will reduce the good outcome of surgery later.I was all set for MVD surgery until they found a AVM close to the area which they were afraid to disturb.I first had Cyberknife to treat the AVM and when my pain returned (and it was terrible and not receding)i went for the Gamma knife.Good luck to you!
No,i don't think your husband has a AVM..AVM has a Bens friends site here also.
Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body. I'm very lucky i didn't have a bleed.Too many sad stories on the AVM site.
ksbowers said:
Don,
my husband is considering Gamma Knife. His trigeminal nerve is touching his basilar artery...is that what you are referring to by "AVM"?
Don said:I had GammaKnife in mid July and am blessedly pain free now with no meds for tn.I have some tingling /numbness around the eye and i know it's the nerve or the TN trying to attack,but i'm good.I'm so happy i did it even if it doesn't last past tomorrow.Research tells me it can range from not working at all to lasting 10 + years.Others are right in saying it is a nerve damaging procedure and will reduce the good outcome of surgery later.I was all set for MVD surgery until they found a AVM close to the area which they were afraid to disturb.I first had Cyberknife to treat the AVM and when my pain returned (and it was terrible and not receding)i went for the Gamma knife.Good luck to you!
thanks for your response Don....
No problem at all.Best of luck to your husband,you, and your family.Please let us know what he decides to do and how it goes.Probably a teflon pad placed between the vein and nerve would permanently fix the issue.That's the more invasive surgery,but most effective.But that's a decision for he and you to consider and make,along with his doctors.
Hello....I'm Laurel and I had Gamma Knife surgery one year ago. It was unsuccessful but I had no side affects and if I can get the Radiology Oncologist to get on board I will have another go at it. My neuralgia is an exceptionally rare one and they went light on the radiation when they did the GK. My Neurosurgeon is on board with trying again...nothing else has worked except medication for the pain.
Check my profile and discussions for more details on the surgery and then let me know if you have any other questions.
Be sweet to yourself
Always~Laurel aka shinglesdidit