Hi, I wonder any one tried Gamma Knife radiosurgery before or have any suggestions about it? I'm thinking of taking it as it's less invasive and less risk. Many thanks~!
Sophia, type in gamma knife into the search box on the upper right of the page, there’s sure to be lots of info there for you. Hopefully someone who’s experienced it will respond soon.
Mimi
Hi - I had LINAC radiosurgery (like Gamma Knife) after my pain came back 9 months after my 2nd MVD. I didn't get any pain relief from it. But the procedure was basically non-invasive. They just attach a frame to your head to keep it from moving during the procedure.
Hi I had Gamma on March 20th. The intense tooth pain and facial pressure is gone. I do however have some facial numbness and periodic headaches. It seems as though for 10 percent of patients facial numbness is an issue. It really became prevalent at the 3 month mark, which I found odd. I am on a " patient to watch" alert. We overheard this while waiting in the hallway after my follow-up. My husband also overheard “She might have been a better candidate for an MVD”, which really upset me. Oh I also now have ear pain on the right side. So as to whether or not this is a success is debatable . Tegretol is down to. 500mg. Hope this was a help. Best wishes.
Thanks so much for these info! I looked up Gamma Knife related post and it seems there are a lot of risk/complications associated with it... Wonder what's the percentage of patient who are med-free after it and how long on average the effect last?
I had two failed mvds before trying gamma knife. I would still say that if you are young and otherwise healthy go for the mvd. What you will find at this site are way more people that have had problems with procedures than those who have successes because people who are cured of tn don’t have reason to seek out a support group. I had a seizure during my first attempt at gamma knife (apparently this never happens and they aren’t sure what the deal is. It’s the only seizure I’ve ever had) and had a second attempt at gamma knife 5 weeks ago. They said it could take between 4 weeks and two months to see any improvement. So far, nothing. They already knew going in they may have to zap me twice though since I have such a stubborn case.
Anyway, do your research, speak with a neurosurgeon you trust, and take some time to make a choice. Even though my mvd failed I would have started with that if I had to start again. It may be more invasive, but it gives the best chance for the longest remission. Good luck!
I agree with HCal. MVD offers the best chance of relief, given you have good health and the risks of this invasive surgery do not outweigh the benefits. I had almost 9 pain-free years after my first MVD. Then after the second, I only had 9 months. The radiosurgery I had after that made no difference at all .... just gave me a numb-ish area on my forehead and interrupted some memories (although they said this would not happen). Do your research carefully....and don't be afraid to ask the Drs about number of procedures done, success rate and recurrence rates. Best of luck to you.
Not again, I also have some memory problems and speech difficulties when I get overtired. It’s very upsetting. Neurosurgeon says it will get better with time. What will get better? The memory problem or my acceptance of this being part of my process. He smiled and says we’re not sure. Which only reiterates to me that no one person has the same journey with TN, irregardless of the procedure done or reactions to prescribed medications. Still, I find more help here.
Lou - You are correct. No one has exactly the same journey or reactions. I don't know why the Drs can't seem to understand this. When you have a reaction that's not one of the "common" ones, they look at you like you are crazy. Glad to know someone else has had memory issues after radiosurgery. It's like the memories are still there, but they're all scrambled up. Very frustrating!! I also think I had personality changes. I am just not the same person I was before the procedure. At first I blamed medications...but now I am not taking any of them and nothing is different. I am just not myself anymore. And it's been 6 years...so I doubt anything is going to get better after all this time. Wishing you the best and hope your memory problems get better. Are you taking any meds that cause short term memory problems....like gabapentin?
Lou said:
Not again, I also have some memory problems and speech difficulties when I get overtired. It's very upsetting. Neurosurgeon says it will get better with time. What will get better? The memory problem or my acceptance of this being part of my process. He smiled and says we're not sure. Which only reiterates to me that no one person has the same journey with TN, irregardless of the procedure done or reactions to prescribed medications. Still, I find more help here.
Thanks again everyone! I'm 56 years old and my health condition is just about average. I've got TN for only 6 months and I'm already on 800 mg Tegretol daily. The reason I'm considering Gamma Knife is mostly because I'm scared of the risk of MVD. But I might reconsider it now.
Sophia - I was 58 when I had my 2nd MVD. I consider my health average (hypertension and hypothyroidism, both of which are well controlled with meds) and the surgery went well, although my recovery was a little slower than when I had the first MVD at 49. It highly depends on the skill of the surgeon. The first neurosurgeon I saw had never done a repeat procedure and I was NOT going to be his first, as the risks are higher with a repeat procedure. I did some research and went to another city with a big neurosurgery department (Cleveland Clinic) where the surgeon does the procedure almost every day and had done hundreds of repeat procedures. Best of luck to you.
sophia said:
Thanks again everyone! I'm 56 years old and my health condition is just about average. I've got TN for only 6 months and I'm already on 800 mg Tegretol daily. The reason I'm considering Gamma Knife is mostly because I'm scared of the risk of MVD. But I might reconsider it now.
Dear Sophia:
I had gamma knife 12/21/12, after 1.5 years of suffering. It took 3 months for the pain to go away, but I am happy to report that after cursing my surgeon daily for the first few months, I am happy. I only have a twinge by my right nostril a few times a month, not enough to be medicated (conked out!) on oxycarbazepine, baclofen, clonazepam, prozac (depressed cuz I was in pain). I was gungho on MVD, but 2 of 3 consulting neurosurgeons thought gamma knife better for me. I had Dr. Neal at Marshfield Clinic here in Wisconsin do it, he's done hundreds.His track record is excellent and he's had many patients 10+ years out with no recurrences.
I am VERY thrilled with results, you must be patient though!
Have a pain free day,
Mollycule
How awesome for you! I had mine 6 years ago and NOTHING! I sincerely hope you never have a recurrence, because when it recurs.....it comes back with a vengence! BTW...would you mind telling your age and do you have any other comorbidities?
mollycule said:
Dear Sophia:
I had gamma knife 12/21/12, after 1.5 years of suffering. It took 3 months for the pain to go away, but I am happy to report that after cursing my surgeon daily for the first few months, I am happy. I only have a twinge by my right nostril a few times a month, not enough to be medicated (conked out!) on oxycarbazepine, baclofen, clonazepam, prozac (depressed cuz I was in pain). I was gungho on MVD, but 2 of 3 consulting neurosurgeons thought gamma knife better for me. I had Dr. Neal at Marshfield Clinic here in Wisconsin do it, he's done hundreds.His track record is excellent and he's had many patients 10+ years out with no recurrences.
I am VERY thrilled with results, you must be patient though!
Have a pain free day,
Mollycule
Dear Sophia:
I am 57 and had Chiari I malformation decompression surgery 9 years ago (cerebellar tonsils 13 mm trimmed, first two vertebrae shaved thinner, patch was from my own thigh fascia, not pig/cadaver). Otherwise just asthma, high cholesterol and a few pulmonary embolisms that necessitate me being on blood thinners.
Mollycule