Had two embolizations done. After 2nd embo 2 months ago, I have stroke like symptoms with weakness on left side. undergoing phys therapy. Now, doc is scheduling for Cyber Knife to take out whatever AVM is left after 2nd embo. As AVM is in Pineal Gland / Brain Stem region, I am concerned about Necrosis (damage to healthy tissue after radiation). Per statistics there is a 5% chance of complications! Normally, in radiation treatment, the complications show up after a long wait (typically 12 months). Looks like Open brain surgery may not be the option due to the AVM location. Never had AVM bleed - was diagnosed with headaches.Would appreciate feedback from members about long term side effects after Cyber / Gamma Knife treatment. I understand that Gamma and Cyber are almost equal in effectiveness with CK less invasive as there is no frame attached with screws.
wow. most of you are lucky. i have an avm, which has left me paralyzed on my right side, arm and leg. i have done the gamma knife thing in sept 08, and it is now oct 09 and still the same. now, it took 3 months after the treatment before i seen myself go paralyzed due to the swelling. during those 3 months i felt queezy after driving, eating, and tired but other than that i thought everthing was fine.
the doc had me on steroids but my body couldnāt handle it and the weight gain was too much, even have stretch marks, badly. so he said to be patient and wait it through. now it has been 13 months and still no change. things have been quite challenging. iāve tried walking, nerve stimulators, everything you can think of, iāve tried to get my body to recover from this.
updateā¦ I still feel great and itās been almost a month post radiation. 
Hi my nameās Nathan, Iām 16 years old. I read your story and felt that I had to reply to it. Seems like you had it really hard. Next week Wednesday Iāll be getting my gamma knife and your story makes me feel a little unsteady. If you can get back to me I would like to know more about it and would like to know more of your experience. Thanks I hope to hear from you soon.
ron ryan said:
wow. most of you are lucky. i have an avm, which has left me paralyzed on my right side, arm and leg. i have done the gamma knife thing in sept 08, and it is now oct 09 and still the same. now, it took 3 months after the treatment before i seen myself go paralyzed due to the swelling. during those 3 months i felt queezy after driving, eating, and tired but other than that i thought everthing was fine.
the doc had me on steroids but my body couldnāt handle it and the weight gain was too much, even have stretch marks, badly. so he said to be patient and wait it through. now it has been 13 months and still no change. things have been quite challenging. iāve tried walking, nerve stimulators, everything you can think of, iāve tried to get my body to recover from this.
My update: It has now been 18 months since my Cyber Knife treatment at Stanford. After my last MRI, just before the New Year, the doctor said he thought the AVM was gone. It was a small AVM but that is good news. I will have to wait 1 more year before another MRI and angiogram to confirm. I had little to no side effects. After 6 months MRI showed a small amount of swelling but none now.
How are you doing Nathan? My husband found out about his AVM when he was 17. It was in the part of the brain that we could not operate on at the time. He is now 37 and lived with it for 20 years, He will be having gamma knife surgery at the end of this month and some of these stories are scaring me. I just wonder how you came out!
Nathan Santiago said:
Hi my nameās Nathan, Iām 16 years old. I read your story and felt that I had to reply to it. Seems like you had it really hard. Next week Wednesday Iāll be getting my gamma knife and your story makes me feel a little unsteady. If you can get back to me I would like to know more about it and would like to know more of your experience. Thanks I hope to hear from you soon.
ron ryan said:wow. most of you are lucky. i have an avm, which has left me paralyzed on my right side, arm and leg. i have done the gamma knife thing in sept 08, and it is now oct 09 and still the same. now, it took 3 months after the treatment before i seen myself go paralyzed due to the swelling. during those 3 months i felt queezy after driving, eating, and tired but other than that i thought everthing was fine.
the doc had me on steroids but my body couldnāt handle it and the weight gain was too much, even have stretch marks, badly. so he said to be patient and wait it through. now it has been 13 months and still no change. things have been quite challenging. iāve tried walking, nerve stimulators, everything you can think of, iāve tried to get my body to recover from this.
Hi,
The only thing I experienced was my scalp was numb in one small area for about 6 months. Other than that I was side effect free.
My husband is now 3 months out from his cyber knife surgery. His procedure went great, No side effects whatsover! He does have occasional seizures still though. His AVM was pretty big, so we will probably have the procedure again in three years.
It was interesting what everyone had to say. I personally have had a lot of side effects from my gamma knife.
I had a stroke when I was 10 in 2000. I had my first gamma knife in 2001, then had another in 2003? (Donāt quite remember)
After the first procedure I was fine and didnāt experience any symptoms. I had MRIs every 6 months and they realized the AVM was still there (There was more behind what they got rid of)
So after the second Gamma knife I started having side effects. It wasnāt immediately after so I didnāt realize it was an effect of the procedure.
Ever since then the effects have been the same. I have a weakness in my entire left side with my foot being the worst. I canāt really wear sandals because my toes donāt grip right and my ankle is slightly turned so they donāt stay on. I eventually started physical therapy for ths (in 2008 because they never related my symptoms!) I ended up stopping PT though because it was too expensive.
I also have a quarter vision loss in both my eyes (bottom left) so if someone is on my left or right in front of me but below and to the left, I canāt see them.
I also go numb on my left side when I get tired/stressed/startled. I still havenāt figured out what causes this/how to prevent it. But when it happens normally my mouth and face feels numb and droopy almost and then my left side goes slightly numb. I just feel very fatigued and often have to sit down.
I had an angiogram in 2009 and they said my AVM was not gone but another gamma knife was not an option. I havenāt been able to see a doctor since then since my insurance doesnāt cover it.
Iām not sure if the symptoms are caused from the gamma knife, my AVM, or just something else.
Hi there, I am new to all this and a little scared by the whole thing! Can I ask, did you have seizures before the Gamma knife and had your AVM bled? Thanks.
Caress said:
It has taken me the better part of 14 months to recover from gamma knife. Mine was January 2007. Mostly I have been so tired and had a lot of seizures. This past few months have gotten better. I hope that all goes well.
Lenaā¦ I had seizures before the gamma knife treatment. Mine started after my 2nd embolization which was 3 months before gamma ~Andrea
Lena Court said:
Hi there, I am new to all this and a little scared by the whole thing! Can I ask, did you have seizures before the Gamma knife and had your AVM bled? Thanks.
Caress said:It has taken me the better part of 14 months to recover from gamma knife. Mine was January 2007. Mostly I have been so tired and had a lot of seizures. This past few months have gotten better. I hope that all goes well.
I had X knife in 1998, A few mos. after I started to have memory problems , still have the short term memory issues, lke finding auto in parking lots, have making my hands to do what I want done , helps sometimes to close eyes and do the task example button my shirt my pants, belt etc.
Andrea Fisher said:
Lenaā¦ I had seizures before the gamma knife treatment. Mine started after my 2nd embolization which was 3 months before gamma ~Andrea
Lena Court said:Hi there, I am new to all this and a little scared by the whole thing! Can I ask, did you have seizures before the Gamma knife and had your AVM bled? Thanks.
Caress said:It has taken me the better part of 14 months to recover from gamma knife. Mine was January 2007. Mostly I have been so tired and had a lot of seizures. This past few months have gotten better. I hope that all goes well.
james hurley said:
I had X knife in 1998, A few mos. after I started to have memory problems , still have the short term memory issues, lke finding auto in parking lots, have making my hands to do what I want done , helps sometimes to close eyes and do the task example button my shirt my pants, belt etc.
Andrea Fisher said:Lena...... I had seizures before the gamma knife treatment. Mine started after my 2nd embolization which was 3 months before gamma ~Andrea
Lena Court said:Hi there, I am new to all this and a little scared by the whole thing! Can I ask, did you have seizures before the Gamma knife and had your AVM bled? Thanks.
Caress said:It has taken me the better part of 14 months to recover from gamma knife. Mine was January 2007. Mostly I have been so tired and had a lot of seizures. This past few months have gotten better. I hope that all goes well.
Wow James your gamma treatment is still impacting your memory over a decade later? I am so sorry to hear that. Did the gamma at least get rid of the AVM?
Leeanne Newby said20over%20a%20decade?%20Did%20the%20gamma%20treatment%20get%20rid%20of%20the%20AVM%20or%20is%20it%20the%20AVM%20causing%20your%20memory%20problems%20or%20something%20else?%20I%20had%20gamma%20a%20little%20over%20a%20year%20ago,%20no%20change%20yet:
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james hurley said:I had X knife in 1998, A few mos. after I started to have memory problems , still have the short term memory issues, lke finding auto in parking lots, have making my hands to do what I want done , helps sometimes to close eyes and do the task example button my shirt my pants, belt etc.
Andrea Fisher said:Lenaā¦ I had seizures before the gamma knife treatment. Mine started after my 2nd embolization which was 3 months before gamma ~Andrea
Lena Court said:Hi there, I am new to all this and a little scared by the whole thing! Can I ask, did you have seizures before the Gamma knife and had your AVM bled? Thanks.
Caress said:It has taken me the better part of 14 months to recover from gamma knife. Mine was January 2007. Mostly I have been so tired and had a lot of seizures. This past few months have gotten better. I hope that all goes well.
Hi, Iām due to have gamma knife soon, but Iām very scared. You say you gad no side affects, where was your avm. Iāve had no bleed and mines left frontal lobe. Where was yours.?. Hopefully I will be ok too. Iām avin mine done at shefield in England . 
Lanie Goodman said:
Hi Donna, I had my gamma knife on Dec 1st and so far, no side effects. I have fewer headaches (hardly any, actually) and continue to work hard and live my life as I always did. Thankfully, I found about my AVM by accident I never had a bleed, so this was preventive. I was very anxious and frightened by the procedure, but once it was overāto tell you the truthāI felt so relieved, I felt a thousand times better. In any case, am very glad I did it.
Let me know how things go with Matt.
Best,
Lanie
I am curious about GK side effects... this if on behalf of a loved one who is most likely going to receive gamma knife treatment for an unruptured, grade 3 avm, about 3.7 cm and involving "the left central sulcus, precentral gyrus, and postcentral gyrus."
I know that the effects of a bleed are devastating, and that the GK side effects are probably worth the risk in most cases. I guess what I want to know from people is, "would you choose this treatment again?" and "would you have done anything differently regarding the scheduling?" I just wish we could go on a nice trip before his treatment, since we don't know for sure what he might feel like afterwards. But hearing that people would do it all over again might make me feel better about all of it.
Hi sarah! like you i am scared of having the gamma knife, but after reading peoples stories on here i feel more confident. Iāve already had surgery and i came out of it well, but it took along time to recover. I have bin given the option of surgery again but there are more side affects with surgery, and after being in hospital and seeing a lady who had the same op as me with terrible side affects it scares me to death to go thru what that poor lady didā¦ I have been looking on websites bout gamma knife and if uve not had a bleed prior to gk it is less unlikely u will. Ive not had a bleed or siezureās . Im due to go to shefield england soon to discuss all the treatment, so i will get back to you wen i no more. I hope this will help you.
Sarah Claire said:
I am curious about GK side effects... this if on behalf of a loved one who is most likely going to receive gamma knife treatment for an unruptured, grade 3 avm, about 3.7 cm and involving "the left central sulcus, precentral gyrus, and postcentral gyrus."
I know that the effects of a bleed are devastating, and that the GK side effects are probably worth the risk in most cases. I guess what I want to know from people is, "would you choose this treatment again?" and "would you have done anything differently regarding the scheduling?" I just wish we could go on a nice trip before his treatment, since we don't know for sure what he might feel like afterwards. But hearing that people would do it all over again might make me feel better about all of it.
where was your AVM located?
Brenda Nye said:
Hi Donna I had many side effects after the gamma knife that I wasnāt expecting. The first being stroke like symptoms on the whole left side of my body. I also had severe head aches. Those symptoms disapeared along with the AVM. Now 5 yrs later, Iāve had trouble getting words out or remembering. Also my spelling is awful. This past winter, I went through Hyperbaric Oxygen treatment (because of radiation damage due to the gamma) for 6 weeks 5 days a week. So far things are great and I hve my fingers crossed. Good luck to you, and remember everyone is different. I ve had many seizures also. Im on seizure medicine and keep close eye on that.
My name is erik hunt i live in Ohio and so far Ive had 5 brain surgeries and Im still having siezures i get headaches and sometimes my whole right side get numb and i get stress siezures and siezures that i have when i go to the bathroom and im on three different siezure meds.
Hi there.
I had gamma knife 15 years ago. It proved successfule after 4 years. However, as a result I became an epileptic and was recently diagnosed with MS. But I am a fighter and I am here. Good luck and God bless you.
Loretta