As I just had my gamma knife treatment about a month ago .What I’d like to know are there always some type of side effect ever so big or small ? I have read where people do have them but are there people that do not ? By the way this post should be rated R for the total misuse of the english language and punctuation . Thinks Mr Gates for spell check Gordon
Mate, you can always really on side effects, even walking wears your hips out.
The important thing is to be positive
Alan
Alan You got that right I think I have side effects from my side effects
I had gamma knife in June. I now get headaches that intensify if I am stressed. My doctor told me that the headaches mean that the radiation is working but since there is no change in the size of my AVM yet, I am not sure if that is true! I’d be interested to find out if I am the only one with this type of headache.
Rebbecca i also can’t handle ANY stress i get horrible headaches if i clean to much bend over to pick things up if I’m on the computer 2 long. i just always have a mild headache and then will go (like now) through a spell of really bad headaches were i can’t get out off bed or off the couch. Keep your head up I know its hard
Rebecca Watson said:
I had gamma knife in June. I now get headaches that intensify if I am stressed. My doctor told me that the headaches mean that the radiation is working but since there is no change in the size of my AVM yet, I am not sure if that is true! I’d be interested to find out if I am the only one with this type of headache.
I was just hopeing that somebody would say I had my Gamma and I never had any side effects My avm just got smaller ! not my luck . I just kinda feel like I have the flu in the evenings for about a week then I’ll feel fine for a week and this has been going for months. Just not as bad after my gamma. Oh well Thank for the thoughts
Gordon D,
Sorry didn’t reply sooner…had hip replacement surgery 4 weeks ago. Anyway, as to my thoughts about your question…It’s been 3 1/2 years since I had a gamma knife type procedure and I do believe that it made my cognitive abilities, finding the right words, cannot spell anymore, I now have dyslexia. The Dr’s don’t know that much about the brain, so most neuros I saw were not able to tell me if the gamma knife procedure caused me these problems or the AVM. I just see it this way…my Dr. at UCLA in his records says he notified and apprised me of the complications possible ewith the radiation. Well, he never really did (I do not think they are really sure) and I read my massive stack of reports thoroughly and the complications were on the form and I read them for the first time. One of them is neuronal necrosis of surrounding healthy brain cells. Even though my procedure worked well and closed up the ruptured vessel, I KNOW there is no way they can hit the AVM so precisely that they do not hit and kill healthy neurons. I had Stereotactic Radiosurgery, which is like a generation above gamma knife, more precise and 3-dimensional blast of radiation. They calculate the “precise” amount of radiation and the best angles of delivery to miss as many healthy cells. Now, how can they actually do that without knocking out some healthy cells? The brain is so dense with neurons and I know the radiation blast is very precise, but come on?? Thus, I attribute some of my cognitive problems to the radiation and some to the AVM. While the AVM itself caused some tragic problems, I do think the radiation caused me to have some of the other problems. Just my thoughts after reading alot about this.
If anyone disagrees with this, please respond with your thoughs. Thanks, and hang in there. Leslie
Yes, there are side effects. I have a headache and I also lost organizational skills and a little of my memory. My doctor told me it would take up to three years before they could determine if the gamma knife worked. I had two gamma-knife treatments. One in May of 2008 and March 4 of 2009. Then I had my bleed on Friday the 13th of March…9 days after the gamma-knife. Don’t know if the gamma-knife shifted stuff around and caused the bleed or what. I have had 3 coilings that actually made the headaches go away but the gamma-knife gave me my headache back…although not as severe. I got a place they couldn’t do anything with too…so they are thinking the bleed might have been from there. I won’t know until 18 months from now when they feel it’ll be safe to do an angiogram (I spelled that wrong, I’m sure). Any I keep on trucking. God’s taking care of me…He is in control.
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Leslie- thank you for addressing this. My daughter had gamma on Nov 11 and we just noticed her hair is falling out, something they told us would NOT happen. I was told only a few side effects…when I asked about delayed side effects I was told there were none except swelling. The center we went to has a big glossy brochure for the gamma knife but nothing talks about side effects. I’m starting to become disillusioned with the treatment and angry with myself because I am usually the one to question everything. Child #2 has gamma scheduled for tomorrow and just received the blow that 2 other children are positive for HHT. Too much
Leslie Chaks said:
Gordon D,
Sorry didn’t reply sooner…had hip replacement surgery 4 weeks ago. Anyway, as to my thoughts about your question…It’s been 3 1/2 years since I had a gamma knife type procedure and I do believe that it made my cognitive abilities, finding the right words, cannot spell anymore, I now have dyslexia. The Dr’s don’t know that much about the brain, so most neuros I saw were not able to tell me if the gamma knife procedure caused me these problems or the AVM. I just see it this way…my Dr. at UCLA in his records says he notified and apprised me of the complications possible ewith the radiation. Well, he never really did (I do not think they are really sure) and I read my massive stack of reports thoroughly and the complications were on the form and I read them for the first time. One of them is neuronal necrosis of surrounding healthy brain cells. Even though my procedure worked well and closed up the ruptured vessel, I KNOW there is no way they can hit the AVM so precisely that they do not hit and kill healthy neurons. I had Stereotactic Radiosurgery, which is like a generation above gamma knife, more precise and 3-dimensional blast of radiation. They calculate the “precise” amount of radiation and the best angles of delivery to miss as many healthy cells. Now, how can they actually do that without knocking out some healthy cells? The brain is so dense with neurons and I know the radiation blast is very precise, but come on?? Thus, I attribute some of my cognitive problems to the radiation and some to the AVM. While the AVM itself caused some tragic problems, I do think the radiation caused me to have some of the other problems. Just my thoughts after reading alot about this.
If anyone disagrees with this, please respond with your thoughs. Thanks, and hang in there. Leslie
Today my upper lip started trimbeling, it has done it on and off all day . Kinda made me feel like… Elvis Presley I’m … All Shook Up !!! hu hhhhhhhhhhhhhhh ya ya
Oh by the way thanks for all the good input. I was just wondering if most of the sides effect come early like in the first 6 month to a yr or after. I don’t know why I ask ! everybody is diff but what the heck… Well see
LOL - It’s good to have a since of humor. I was told side effects ususally occur if there are any 6-12 months after
Gordon D said:
Today my upper lip started trimbeling, it has done it on and off all day . Kinda made me feel like… Elvis Presley I’m … All Shook Up !!! hu hhhhhhhhhhhhhhh ya ya
i am glad to see this post. I had the gamma knife on Sept. 28, 2009 and had horrible headaches before. that is how we found the AVM. had horrible headaches after gamma knife afterwards. finally, today, 1/5/2010 after taking topamax 100 mg a migraine med. for a while, i have a little relief. i still have mild headaches all day long and come home from work exhausted and put ice on my head but at least i am able to function during the day. right after the gamma knife, i could not get out of bed, the starting working 1/2 day; so had to move gradually. still cant do to much or my head hurts and i put ice on it to stop the pain. at least i know that it is normal. also i had a burning feeling and went to the hospital to see if i was bleeding; they did a C-scan and confirmed that it was not so i was releaved…but i was scared. so needless to say this website is very helpful to me.
thank you all for your posts.
tina
Tina I had that burning feeling too ! now that was strange kinda burning sting thing. I’'ve had so many side effect from this Avm over the last 5 yrs I just laugh .Because I feel now that its just my Avm fighting for its last breath
Leslie,
I had gamma knife done 4 yrs ago with many side effects. My spelling is terrible know and I stumble for words. Last winter I went through 3 months of Hyperbaric treatment because they said I had radiation damage. So yes there are radiation side effects! I’ve never heard of anyone else having gone through this.
Leslie Chaks said:
Gordon D,
Sorry didn’t reply sooner…had hip replacement surgery 4 weeks ago. Anyway, as to my thoughts about your question…It’s been 3 1/2 years since I had a gamma knife type procedure and I do believe that it made my cognitive abilities, finding the right words, cannot spell anymore, I now have dyslexia. The Dr’s don’t know that much about the brain, so most neuros I saw were not able to tell me if the gamma knife procedure caused me these problems or the AVM. I just see it this way…my Dr. at UCLA in his records says he notified and apprised me of the complications possible ewith the radiation. Well, he never really did (I do not think they are really sure) and I read my massive stack of reports thoroughly and the complications were on the form and I read them for the first time. One of them is neuronal necrosis of surrounding healthy brain cells. Even though my procedure worked well and closed up the ruptured vessel, I KNOW there is no way they can hit the AVM so precisely that they do not hit and kill healthy neurons. I had Stereotactic Radiosurgery, which is like a generation above gamma knife, more precise and 3-dimensional blast of radiation. They calculate the “precise” amount of radiation and the best angles of delivery to miss as many healthy cells. Now, how can they actually do that without knocking out some healthy cells? The brain is so dense with neurons and I know the radiation blast is very precise, but come on?? Thus, I attribute some of my cognitive problems to the radiation and some to the AVM. While the AVM itself caused some tragic problems, I do think the radiation caused me to have some of the other problems. Just my thoughts after reading alot about this.
If anyone disagrees with this, please respond with your thoughs. Thanks, and hang in there. Leslie
Gordon, any suggestions on how to ease the pain from the headaches? I am on topamax. I like the way that you explained…look at as if the AVM is fighting for its last breath…the headaches seem to be the only thing keeping me down at this time…thanks for your words of wisdom.
tina
Gordon D said:
Tina I had that burning feeling too ! now that was strange kinda burning sting thing. I’'ve had so many side effect from this Avm over the last 5 yrs I just laugh .Because I feel now that its just my Avm fighting for its last breath
Tina I wish I had the silver bullet for your head aches . But I can tell you that the stinging burning feeling is gone and I now have one less side effect from my Avm. Its been gone for about 2 to 3 weeks so hopefully your’s well be gone soon too . " Die Beast Die "
Wow, we have had no obvious symptoms of Joey’s AVM until the MRI, but then again he’s nonverbal and has autism. Just rethinking whether we should have gamma and CAUSE side effects rather than leaving his unruptured AVM alone. Don’t know whether we should be Proactive or Reactive. Did anyone have Proactive gamma and ultimately ended up with symptoms when they had NONE to begin with?
Hi Gordon
I just had my treatment completed on Thursday. Three days later my hair is gradually falling out. So I bought a set of clippers yesterday to cut it all out. I’m thinking I’ll have some form of psychological distress if I woke up one day with chunks of hair on my pillow! At least I think this way, I can spare myself from possible psychological hurt?
I also have a numb left leg now, but that’s because my avm is located on the motor cortex on the right side (if you didn’t know, if your avm is on the right, it affects your left side). My doctor said this may occur and that I may lose feeling in my left leg (not permanently), so I have to be careful. Apart from that nothing else in terms of side effects. I’ve only ever had minor headaches otherwise have a normal life.
Hope all goes well with your treatment.
Jim
PS. Someone in an earlier post said stereotactic treatment is a newer form of treatment. Actually, it is older than Gamma Knife, but it is more advanced since there has been more time for development and research. Stereotactic allows the radiation to track/map the 3-D contours of each individual’s avm by computer generating a 3-D map of the avm (the radiation moves around the avm), whilst gamma only allows radiation to be directed at the centre of the avm (the radiation is immobile). The only other difference is stereotactic radiation is generated from electricity, whereas in gamma radiation, a cobalt metal source is used to generate the radiation. Hope this info clears up a few things.
Do you know what dosage of radiation they used for you & also how long was your treatment for?
Jim said:
Hi Gordon
I just had my treatment completed on Thursday. Three days later my hair is gradually falling out. So I bought a set of clippers yesterday to cut it all out. I’m thinking I’ll have some form of psychological distress if I woke up one day with chunks of hair on my pillow! At least I think this way, I can spare myself from possible psychological hurt?
I also have a numb left leg now, but that’s because my avm is located on the motor cortex on the right side (if you didn’t know, if your avm is on the right, it affects your left side). My doctor said this may occur and that I may lose feeling in my left leg (not permanently), so I have to be careful. Apart from that nothing else in terms of side effects. I’ve only ever had minor headaches otherwise have a normal life.
Hope all goes well with your treatment.
Jim
PS. Someone in an earlier post said stereotactic treatment is a newer form of treatment. Actually, it is older than Gamma Knife, but it is more advanced since there has been more time for development and research. Stereotactic allows the radiation to track/map the 3-D contours of each individual’s avm by computer generating a 3-D map of the avm (the radiation moves around the avm), whilst gamma only allows radiation to be directed at the centre of the avm (the radiation is immobile). The only other difference is stereotactic radiation is generated from electricity, whereas in gamma radiation, a cobalt metal source is used to generate the radiation. Hope this info clears up a few things.