I underwent the treatment at the back end of October and have had little side-effects so far.
In part my decision to choose GK was based on of the very high percentages of Obliteration (up to 90% in some cases) quoted by my doctors and medical journals, however, since reading this forum I think I've yet to come across anybody who was cured with just a single treatment. It's got me to wondering whether these percentages are accurate or if the figures have been distorted somehow.
Hi, Joe, I believe many of our members have had their avms obliterated after one gamma treatment, but may be less likely to post about that, so I will share this with everyone and hopefully bring in some success stories for you. :)
Yes! I had LINAC stereotactic radiation in Sept 09. Prior to that I had two embolizations. I had cta’s throughout the 3 year waiting period and after 3 years I was told my avm was obliterated. I have no symptoms whatsoever. I’m completely cured.
Hey Joe, I’m in the same boat as you. I had my Gamma Knife in November 2013 & just had my one year follow up a couple of months ago. So far there has been no change what soever. Although my memory, balance and speech started to get pretty bad around that time. They’re now telling me that it’s normal to start showing symptoms like that for a while around the one year mark and that for most people there’s no change until the second year so we’ll see. Good luck and I hope you get the answers you want
Hey there Joe. I'm very sorry about the difficulty you are having. I have had gamma knife two times and was scheduled for a third when my third bleed happened. I share that to let you know that while gamma knife is a very painless procedure, it does run the risk of missing other avm phenomenon in the brain. My third bleed happened after the second gamma knife surgery. Ultimately, a craniotomy was performed to eradicate the final intracranial avm. Your doctors should be able to tell if you are completely in the clear with an angiogram. However, it is always okay to ask questions and seek a second opinion. My prayers are with you as you deal with this malady.
I had Gamma Knife treatment July 2008 and although it has left me with vision trouble it did get rid of my AVM, only damaged my optic nerve because my AVM was very close to it, and I was warned before hand, still would have had it done anyway better than living with the thought of bursting at any point again, as I had already had one bleed, that is how they found it. only had one treatment and 18 months later was given all clear, good luck, hope yours is clear to.
Hi Joe, thank you for posting this discussion and if you haven't already, you may want to post it in the radiosurgery sub-group. I had stereotactic radiosurgery on my 2nd AVM (it was a small one and could not be embolized due to its small size); I found out after 8 months that a MRI showed the AVM was obliterated. The news was so unexpected that I started to cry. Best wishes to you.
Hello. I have an avm in the middle of my brain and i have had gamma radiation twice now. The first surgery did basically nothing they think they might have radiated the wrong spot since My brain was so swelled. Last year i had another dose and it was my last since they don’t want to radiate a teenager too much. After the first dose i had a lot of vision problems especially when i was stressed. Through the past year they have been getting as long as i don’t become too stressed. Hope this helps!
My son had it almost four years ago and each year he gets an MRI. It looks like there is no activity but they will give him an angiogram this year which is the only way to tell for sure if it’s gone. They said it works over time to get rid of it but the chances of working are high
My Mom was 56 when she had gamma knife in Aug '12. She had a small cvm on her brainstem. It was obliterated after one treatment. BUT, she did develop radiation necrosis in Oct '13. This is something that everyone that receives gamma knife should read about. She lost her battle with it on Dec 22nd 2014. It is a heart wrenching illness to watch someone you love have to deal with. I had never heard of it and we were not told that it was ever a possibility to get. Please do your research.
Hi Joe, My Joe was 15 when he was diagnosed with his Grade IV AVM in the right frontal lobe. After the CT scans, MRIs, and angiogram, it was determined by the amazing team at UCSF that gammma knife was his only option. After 2 gamma knife treatments, 3 months apart, his large AVM has been obliterated!!!! We are so grateful for all of the doctors at UCSF!!
Hopefully oe, I had an avm in left frontal lobe, had gk in Oct 2011 and it was reduced significantly in June 2012, then a later mri in sept 2013 confirmed no blood flow…hope this helps. Had terrible side effects though but steroids cured most of them in the space of 12 months…
Nothing much now which I can’t handle in my working mum routine
I had my first gamma knife treatment way way back in 1990 - my AVM was very difuse so it was not possible to embolise or operate. I was told that the radiation would be at its most active for the first 3 years after the treatment and that after this I could expect some small changes up to 7 years after treatment. After 3 years my check angiogram showed the GK had been partially succesful but the hospital decided it was safe to treat again at the periphery of the AVM. I had a second treatment after 3 years and check angiograms every year for another 3 year but there was still a small residual AVM. After about 7 years I was called in for an angiogram and much to everyone's surprise the AVM was totally obliterated. It was a wonderful and very unexpected outcome for me. Good Luck with your treatment Joe - I hope it works out as well for you as it did for me.
Well, my AVM was large, deep and complicated so the goal wasn't so much to make it go away as it was to occlude it. It was successfully occluded with just one round of gamma knife and it did even shrink some but because of the complexity of it no it didn't entirely go away. However once it was occluded my risk of experiencing a bleed was thought to be no different than anyone else my age in similar health without an AVM so I was pronounced cured.
Hi Joe! I had GK in May 2011. My neurosurgeon said the previous time frame of 1.5-3 years for obliteration are now being extended to 3-5 years. At least in terms of doing a follow up angiogram to confirm obliteration (he is always on the conservative side). That being said, I went in November 2014 and was told I have no signs of the AVM. So from treatment to complete obliteration took me about 3.5 years. I was never on steroids, but I did have a little swelling and edema. I also experience visual auras about once a month (my AVM is was in my right occipital lobe). I'm happy to answer any questions about or discuss symptoms I experienced. It's hard to really explain to a doctor that every time I bend over I felt pressure or I felt more comfortable sleeping on my left side inside of my right or even the few months following GK I felt a sharp pain in the area of my AVM. These were unexplained events that always led to an MRI/A WOW that never showed any issues. Stay positive, take care of your body and focus on healing :) all the best for your recovery!
My daughter had GK on an AVM on her brainstem. After only 1 year it has shrunk to 1/2 to 1/3 of it's original size. Way ahead of schedule. The doctors feel "fairly" confident that it could be gone at the 1 1/2 yr mark. As you can see with so many replies here that everyone seems to have a different experience. I think that AVMs are like fingerprints - no two are alike - especially in size and location. I hope that your experience turns out even better than they are expecting!