I was just told I had an AVM this week. (I almost didn’t even go to the doctor’s and ended up in the ICU. Guess this shows I should take better care of myself). I have a few questions and figured it would be easier to post them in one place then try to find all of the answers on other posts. Thanks in advance for the help!
(1) I am going to have radiation in a month. I’ve read about this some, but does it hurt? I’ve heard the pins hurt?
(2) My AVM is in my brain stem. I am wondering if I will lose my hair during radiation. It’s not a big deal if I do (I have bigger things to worry about, right?), but it’s something I want to mentally prepare myself for in case I do.
(3) Can anyone recommend a doctor to go to for radiation? I live in DC so am near Hopkins and was thinking of going there, but I’m willing to travel for the best doctor.
i had the gamma knife in houston,tx. i live in harris county, basically houston. i was very scared to have the gamma knife done but it is not that bad. they gave me 2 ativan’s (something to relax me) and i am glad they did. i was pretty much passed out during the entire procedure. i did wake up when they put the screws on but even that was not that bad. tell them you wants lots of antivan’s. God Bless You!!! sincerely,grace
i forgot to tell you the gamma knife was done april 1st,2009 i have had no hair loss and i feel fine. the dr told me my platelet count is low right now and wants to repeat my blood test in one month. i guess it is nothing to worry about since they want to wait one month to retest. i do get tired easy and even though i am back at work i am taking it easy. i returned to work 2 weeks after the gamma knife.sincerely,grace.
I had an AVM in the brainstem and gamma radiation. The AVM is now gone and the complications were minimal. My advice is to keep learning about this, talk to people, and get 2-3 opinions on treatment. There are people in this community from DC, browse through the member list and ask them directly. Everyone here is incredibly helpful. Also, my blog has details about my treatment. How was your recovery?
It’s now been two weeks since my bleed, although it feels a lot longer than that! I am getting a third opinion at Hopkins this week. As for recovery, I am still very tired. I am hoping that this will pass. I didn’t take much time off work after the bleed, but I think I will take a week off after radiation. It’s still all a bit scary and some days I don’t want to read anything about it or think about it (although I can’t avoid that!) and on other days, that’s all I can seem to do.
I had Proton Radiation treatment three years ago at Mass General Hospital. The Doctor’s name was Paul H. Chapmen. Six months after my radiation, I had a massive brain bleed. It happened on 12/23/07.
I believe I had a brain bleed because of stress, not because of the radiation. I truley believe that the stress in my life caused my brain bleed.
On 12/26/07, I had a left temporal cranitomy to reduce the bleed. The Doctor that saved my life was Christophy Ogilvy at Mass General. He calls me his miracle. In January of this year, I had a CT scan and Doctor Ogilvy couldn’t see my AVM. This July, I’m going to have a angiogram to make sure my AVM is gone.
While I had a brain bleed, I truly belive that I will be normal again. I have a problem with my sight and can’t read or write very well…Doctor Ogilvie cannot understand how I can write on the computer, but not well on paper. I can only read to about the 3rd grade level. But I see my Speech/Language Therapist every week and I’m working on it! I believe there will be a day when I can read the New York Times! It is very hard for me to read the emails from the people who write on this Survivors network, but I do.
The only thing I can say to anyone that has an AVM is trust in God. It’s truthfully all we can do.