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How long?


#1

My AVM was diagnosed in October of 2012. I have radiation treatments and embolizations 3 times between then and 2016. This October will make 6 years since I have been trying to get rid of this thing. I know I have probably asked this question before, but how long has it taken other people that have had the same treatments I have had, to have their AVM finally declared obliterated. When mine was discovered it was a little over 5 cm in diameter. The first 2 radiation treatments were 6 months apart due to the size. They missed a spot where the 2 treatments overlapped, so it recruited to new arteries.


#2

Hi Melissa:

My AVM ruptured in 2014. I had Gamma Knife Radiation in 2015. Based on what I was told by my Neuro’s in early 2015, I should be having my 2nd GKP in a few months. However, they want to wait a little longer because they don’t want to damage the progress I’ve made to date. After GK, my AVM went from 6cm to 3cm. Now, they want to watch it as I’ve had no problems or issues that would make a second procedure warranted at this time. I was disappointed with their wait & see attitude, but now I think their decision was a good one. You don’t G.K. somebody a 2nd time, if its not warranted. I still have balance issues, dizziness, vertigo, fatigue, etc. Your question of “how long” is one that I have not had the courage to ask. From reading various posts on this site, I have learned that “how long” can be a short time or it can be what seems like forever. So Melissa, lets agree to take it one day at a time, and pray that each day is as good or better that the day before!

Sharon …


#3

Hello Melissa, I have a gamma knife procedure on a AVM near the brain stem in Dec 2016. At that point, the radiation oncologist stated that I should have an MRI every year to check the healing progress, and if it’s still there in 3 years, I should wait one more year, than have a second gamma knife. He said it takes that long for the arteries damaged by GK to heal, close down the blood flow, and become scar tissue or become absorbed by the body. It sounds like you’ve gone past that time. That is frustrating.


#4

It’s probably like starting over since the AVM recruited 2 new feeders. That news really crushed me. I was looking forward to good news that day, not having to go back through treatment again. Still a long time to wait. Patients has never been one of my strong points. I had LINAC radiation. Not sure how GK works. I have seen where a LOT of folks have had that type of radiation treatment done. That just happens to be the system that the Mayo clinic used. Don’t know if one is better than the other. I just know I have had a patch of hair come out all 3 times. Ugh! If it is not gone I wonder if they would offer the option of removal, or would they say “Just wait and see.” My neurosurgeon said that if he had too, he could remove it with no problem now. Hopefully it will be gone and I will get a medication combo that will control my seizures.