Has anyone considered or been thru the gamma knife procedure. It sounds like a good option if MVD surgery has been ruled out as an option. Has it worked for anyone?
Scott,I think it may be a great option for some, that didn't happen in my case. I suffered bad side effects for almost 10 yrs. after and no relief from the GK.Just do your research and remember what works for one doesn't. always the same for someone else. I wish the very best for you.Dawn
scott, may I ask why your MVD was not an option?
Not ruled out yet just doing research on the gamma knife
Your chances of MVD working goes down after having other procedures done first. In talking to my neurosurgeon about Gamma Knife, he said the only time he would recommend any type of radiation treatment of the brain is if one had brain cancer.
Dear Scott:
I've had two gamma knife procedures ( I have TN type 1, isolated to 2nd branch of trigeminal nerve,right side of my nose), one in December 2012 and one in March 2014. It took three months for the first procedure to kick in and then I had 8 pain free months before the pain came back. Meanwhile I weaned off all my meds that made me so loopy and unbalanced. I refused to back on them and white knuckled it until this March. This time, I got pain relief in 3 days and haven't had a twinge since. My neurosurgeon says they put a contrast dye in and the areas they zapped last time light up so they can go further down the nerve to lesion new areas. I try to grab each pain free day for as much gusto as I can, always waiting for the other shoe to drop, I guess!
I was/am a poor candidate for MVD due to previous brain surgery in the area for a Chiari malformation. My neurosurgeon says he has never done 3 GKs, the patient usually then gets an MVD...but I am a special case. I go for my 6 month follow-up soon and plan to ask him about Plan B if the pain returns...Peripheral Nerve Stimulator or whatever. I WILL not go back on those mind numbing drugs.
It really was painless brain surgery (except for the injections in your head to numb where they screw in the titanium frame) and I had no side effects. Did get lots of sympathy as my husband took a picture of me in my Star Trek head frame and sent it around!
Hoping for a pain free day for you,
Mollycule
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I guess I am one of the lucky ones. I had GK 3 to 4 years ago. I take 200-400 mg. of Tegretol as needed as a prophylaxis. I no longer take Gabapentin. At one time I was up to 1200 mg. of Tegretol and 600mg. of Gabapentin. My battle with TN spans more than 30 years and occurred at the time Tegretol was just introduced to neurologists. I have no seizures, but once in a while I experience very low levels of pain which disappear quickly. I recently had molars extracted with no pain response. The team at Washington Hospital Center in DC has a wing dedicated to GK surgeries. There are Neurosurgeons, Radiologists, Physicists and Anatomists who perform the GK and a neurologists who follows your case over time.
Regards,
Marvin
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I had Gamma Knife a year ago this past July 18th.Im pain free and happy.My neuro was experienced with both the surgery and GammaKnife.He worked with the top cancer center Doc and newest Gamma machine in Dallas.I still have some PTSD from the horrific pain i went through.But im med and pain free for now.I certainly don't regret having the Gamma.I do have some tingly numbness occasionally,but not a big deal.I had a AVM and wasn't a great candidate for MVD.Good luck to you.
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I have had 2 Gamma Knife procedures...the 1st in 2009 and though still on meds, was relatively painfree for about 8 months. Back came the TN pain and the 2nd GK was in 2010. Still had pain for about 3 months, and then it suddenly ALL disappeared. Have now been living without any pain for just over 4 years!! Have never taken any medication since 2010, and the only side effect is facial numbness on the left side. Nobody can see it, but it is annoying as it affects my sense of taste and smell, and while my vision is just fine, I have corneal numbness too which feels like "dry eye", but really isn't. A very small price to pay for the awful evil pain of TN. Have no regrets as quality of life was happily restored, and the actual GK procedure was completely painless for me both times, and was home within a few hours afterwards.
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I had the procedure in 2008 and the pain came back 3 years later in 2011. But not as severe and was controlled with Effexor. Now recently had to go off of Effexor and replaced with Amitriptyline.I lost sensation of tongue and taste on right side due to the procedure.
I had the GK in June of this year. The only real issues I had at first was not wanting to eat. Nothing tasted good so I didn't want to eat it and I still have some of that problem now. But I am having a real issue with my vision now. My eyes were hurting before my GK but all the docs thought the GK would fix them now they say that the trigeminal nerve had done too much damage to the optical nerve and there is nothing they can do to fix it. I can't were glasses to help because they don't help. I get very limited time during the day that I can see to be on here and that is with it very enlarged. Over all though my GK was a good procedure I had it on the left side. I would say it has made about a 75% change in my pain on that side. Now I am waiting to have the right side done and see how helpful it is. I am glad I had it over the MVD.
jrulz,
Have you had an extensive examination by an ophthalmologist (MD)??
You need a complete evaluation..
Marv
Radiation keeps working up to 3 years so hopefully it will get better for you.It took about 3 months for my pain to disappear.Sorry about your vision loss.I had shocks and pain in that area,but i didn't know it could impair vision permanently.
jrulz1 said:
I had the GK in June of this year. The only real issues I had at first was not wanting to eat. Nothing tasted good so I didn't want to eat it and I still have some of that problem now. But I am having a real issue with my vision now. My eyes were hurting before my GK but all the docs thought the GK would fix them now they say that the trigeminal nerve had done too much damage to the optical nerve and there is nothing they can do to fix it. I can't were glasses to help because they don't help. I get very limited time during the day that I can see to be on here and that is with it very enlarged. Over all though my GK was a good procedure I had it on the left side. I would say it has made about a 75% change in my pain on that side. Now I am waiting to have the right side done and see how helpful it is. I am glad I had it over the MVD.
I had Gamma Knife and had a wonderful pain free year. I was offered either the MVD or the Gamma, I chose the non-invasive Gamma. It fell apart within a three month period. Pain and numbness on the right side of my face. It literally felt like someone was trying to dig out my teeth. The numbness and pain to the teeth with a clamp like feeling were too much. So… I had the MVD three weeks ago this Tuesday. The objective was to get rid of the burning gums. It has helped, but I’m thinking maybe I should have done it first. The neurosurgeon saw on the MRI an obvious blood vessel invading the Trigeminal nerve. My progress is very slow. The numbness I am told may improve but not much. Here’s the interesting information provided to me by the neurosurgeon who did the MVD while removing the staples. In situations such as mine when both procedures are done and teeth pain remains an issue, a Rhizotomy is suggested, because there is obvious damage done to the teeth during a dental procedure. The blood vessel was removed and Teflon placed to prevent the Trigeminal from further insult. The tiny little nerve fibers that run down into the offending teeth are still an issue. To say this disease is complicated goes without saying. I did during Hurricane Sandy have an endontist do 3 root canals on teeth he insisted were compromised. He did them within 2 weeks. My pain started there and never stopped. I probably presented with Trigeminal, and the nerve was further damaged by the root canals. My dentist was somewhat livid as I was only sent to have a post evaluated. He sent me to a neurologist. So what came first the egg or the chicken? Having no power in the area I lived in I was sent to the only game in town. The Gamma has been very successful for a lot of people. So after this long winded response, gather all the facts about your Trigeminal and then decide. I did have a pain free year, and it was lovely. The very best to you and I hope all this rambling helps to piece together your own personal story. Because we all have a disease that cannot be tied up in one little neat package, and is not the same for everybody.
Yea, I have had a complete eval by a neuro-opthomology surgeon. They are very rare doctors and the opthamologist I saw sent me to him. They thought maybe there is something he can do to save at least part of the nerve. We have found out now that most of the damage is more from the Occipital Neuralgia then from the TN. Either way it sucks and I hate Having to make the font size HUGE on here to use the computer. But it lets me talk to ya'll which is pretty much my only outlet anymore.
Hi Dawn_Monarch 1,
I’m so sorry you suffered even more from the side effects of Gamma Knife. 10 years, yikes! Would you mind telling me the ill effects, as I have been recommended Gamma Knife by a famous Neurosurgeon, but my Neurologist, who has been very honest with me, is concerned about side effects. She says that radiation can scatter, even if it is pinpointed at a target. I wish you relief.
Hi @Hollywood_Girl! This looks like a pretty old thread, and @Dawn_M1 has not been online here for quite some time. But I would encourage you to use the search function if you have a specific topic that you’re looking for information on, and to start your own discussion post if you have a question.
Sharon
Thank you! I’m planning on having a few more consults on Gamma Knife and then will do what you have suggested. I spoke with my neurologist about it today and she said if I were 20 years older, she’d tell me to go for it, but her concern is Delayed Radiation Side Effects, which can cause loss of hearing, vision and balance. Pretty scary stuff, but I’m getting desperate, so we’ll see. Thanks again.
Hi Hollywood girl,
My point of trouble is deep inside my brain, so MVD is not an option. My neurologist said that he would not do GK for me because it could take 8 months to take effect and there was an 80% chance of it returning with a vengeance. I was also told that nerves continue to grow and can go in any direction and spiky. I am not a doctor so I have to do my own research and form my own opinion . I hope for the best for you
Scott