New to the group,

Im Kris. I was diagnosed in july of 2008. I was told my avm was very large. 5.5x 7. It’s located in the center of my brain with very large drain through the center of my brain. I was scared to death after listening to my local Dr. here in Maine. After I went to Mass General, I was a little relieved to hear they treat them fairly often.
I had my first embo in March 2009, and they went through my femoral artery in my leg due to its location. I am still amazed that they were able to push titanium coils up through my artery into an aneruism located in the middle of the avm.
During my second embo in April, I had a stroke and lost my left side for a short time. I regained most of the use, but still a little propreoception issues with left leg. Ironically, the stroke made that procedure not as painful post op.
I had a third in july, and 4th in August. They were thankfully uneventful other then headaches. In November and December I had radio surgery (proton) at Mass Generals Cancer Center. I’m told the embos shrank it about 1/3 the size. Im awaiting my six months to see how the proton therapy is doing. They told me they won’t be able to get rid of it all, and in a few years when Im ready for more procedures, that they will have something different to offer. They were working on new research but couldn’t go into details with me yet.
I was wondering, did many of you have migraines growing up? I used to have them very often. I wasn’t able to function during them. They caused such pain, I would be vomiting and fingers and face numb.
I still get them often, but the symptoms of them have changed alot after each embo. Now its more of a tightening pain up my neck and across the top of my head.
I’m thankful for today. I have 3 sons who need me. I know this has been rough on them watching me go through this, and I try to keep positive and have faith. Im thankful your all here to share and support.

Hi Kris I never had headaches growing up. MY headaches started ruffly when i was 22 and we found out about my avm when i was 23 a month before my 24th birthday. I wanted over a yr before i decided to found put why i had a headache every day i didn’t interrupt my life until i started getting it treated. My headaches now range from ok and tolerable to be not moving out of bed or off the couch and have to take pain pills. I have one son who is almost 6 and had dealt with this since is was just over 2 1/2. I had two embos and gamma knife i’m having another round this year. will know for sure in march as to when. I hope you continue to get better and get all the support you need on here :slight_smile: