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AVM Survivors Network

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#1

Hello everyone. I’ve had the gamma knife procedure done 3 times. I was curious to know if anyone had underwent gamma knife for this amount of times or more because when I went for a follow-up after my 2nd gamma knife I was told that would be my last because of the size and location of my avm. I recently saw my neurologist and he recommended I see the neurosurgeon for a follow-up and mentioned that it would be okay for me to go for another gamma knife. So now I’m scheduled to go for another MRI and appointment with my neurosurgeon. Thanks for your help!


#2

I had the gamma knife twice… first in 2007 (six months post-bleed). After four years, they found two smaller areas they wanted to treat (each 0.5 mm by 2 mm in size). I had an angiogram for imaging, and then a second angiogram when they tried to do embolization. They found that the vein did not feed the areas directly, so I had the Gamma Knife again in 2012. At my last MRI in 2015, they saw nothing from the AVM.
I had also been given false hope in 2011… my MRI (without contrast–at my request) showed a minor sign of the AVM, even though the previous one (also without contrast) showed nothing. My surgeon demanded contrast for the next MRI to tell for sure if I was cured or not, and I was hit with a major shock when he told me that there was an area he wanted to treat again (especially because I went into the hospital that day expecting to be told I was cured).


#3

Hi Sheryl_F. I have had 3 embolizations and 3 LINAC treatments. These span from October 2012 until my last one in December 2015. I am now waiting to have a repeat angiogram to see if the last treatments worked. The first set did not treat an area. Mine was on the larger size so they had to divide radiation treatments 6 months apart. When I had that follow up angiogram, a spot had not been treated in the area that the treatment overlapped. The AVM had recruited 2 new feeder vessels. So after another radiation treatment and embolization in 2015, I am now waiting to see if that has done the job. I’ll have that done Monday, November 20th, 2017. Can’t wait to see if this “thing” is gone. I haven’t had gamma knife. I am not quit sure what the difference is. The Mayo in Jacksonville is where I am being treated. That just happens to be the system that they use.


#4

Thanks for your help. From your experience with the neurosurgeon did he or she show you the MRI before the last embolization you had? When I asked to see the difference in size of my AVM in the first MRI I had before my first gamma knife and the size of the AVM in the last MRI I had before deciding on a third gamma knife, it was quickly shown to me and not clearly explained. I decided to go for the third and supposedly last gamma knife because there was no risk. Embolization was not considered an option for me because of the size and location. Thanks again!


#5

Every visit I have they show me the differences between each MRI. Plus I have access to all my reports, ect. You can log into your account and bring up all your MRI reports, doctors notes… really neat.