My avm is inoperable. After a few hour attempt at embolization, my doctor has now said it is no longer an option. I have had a rupture/stroke march 8th. My avm is around 3 cm in the basal gangila. I was hoping to learn about other's experiences to gather imforamtion and qeastions to discuss with the doctor. Has anyone heard of any other options? I am trying to research clinical trials. Maybe I should just keep an eye on it until advancements have been made. Mentally I am doing great! Just wondering about your experiance! I have heard that radiation is low risk, but there just seems to be so many with complications
Hi there, I had stereotactic radisurgery in april this year on my 3cm avm in left parietal lobe. I can honestly say it was not the most pleasant of things but childbirth is worse! It was a single dose so hopefully no more, biggest side effect I had was fatigue, by 1pm I was knackered and HAD to have a rest! It only seemed to last a month or so. I also lost a wee bit of hair around the pin sites but nothing noticeable. Apparently most side effects do not kick in until later but at the moment things are looking positive. The docs told me there was a 70% chance the treatment would work but it would take up to 3 years. Hope this helps if only a little :)
Melissa R, I had Proton Beam Radiation at Mass General Hospital, although it took me 2 years to become AVM Free. There are only a few areas in the country where you can get that treatment. Do some research on it and then ask your doctor about it. After that, if you have any questions, please feel free to ask me about the treatment. It is helpful to stay strong and stay positive!
the hospital I am going to (the one I went to for the bleed) has a linear accelerator. I do not have insurance. So far they have not refused to treat me. I am in the process of getting pre existing condition insurance plan through the state. I am crossing my finger I can! I have heard that you can get free airfair for medical treatments. I am not sure the details. Do you live close to where you were treated? If not, did you get a discount in traveling?
I feel so lucky to be living in New Zealand, I regularly read about people in the USA who havent got insurance or cant afford treatment. Very sad. Our government here covers medical and there is only 1 place in the country that does radiosurgery which happens to be at the opposite end to me. I was lucky enough that all expenses were paid for including flights etc.
radiation for me was pretty rough. although it was only for a few hours, it was very hard on me, and my family. but...it worked, so im happy. my avm didnt bleed, so i had the embolization, then a few months later, the radiation. where the avm is in my brain, the surgeries effected my vision. i now only have half my vision due to the scar tissie that formed. i will never forget the radiation, even though its been like 16 years. i was very sick for a few months. i was only in grade 9/10, so i missed 3 months of school due to my low immune system and the throwing up. i lost half my head of hair as well. putting the halo on was horrible......i was woked up at 5am, not given food, and they started freezing my head. they put in over 20 needles and my head did not freeze. so i had someone sit on me, and hold me down while they screwed the halo into my head. not fun! the the radiation itself, was very hard. every few minutes they had to come into the room to unscrew my head from the table so i can throw up. but like i said, it worked! after that, i have just been monitored with angio's for the last few years.
Melissa--My AVM was 6 cm. I just had my 3rd Gamma Knife radiation treatment on June 6, and they let me see the scans from June 8, 2011 next to the ones from June 6, 2011. It is already very obvious that the AVM is shrinking. :)
My AVM has not ruptured. My surgeon recommended against surgery for my AVM. Due to the size & location, I would have been at risk for losing vision and some motor abilities.
I also had a craniotomy to clip 2 unruptured aneurysms a month after my first GK. Between the GK & crani, I did have a patch of hair that fell out. My migraines "changed" some, too. They moved locations. However, after I started taking Nortriptylene, my migraines have greatly lessened in frequency & severity--exept for after my 3rd GK earlier this month. I had bad headaches for about 2 weeks, spent a lot of time in bed with ice packs on my head & had to take narcotic pain relievers for a week.
In the past few days, I've started to notice some of my hair falling out again.
Overall, though, I've been having pretty good luck with my GK radiation treatments.
thats great that it has shrunk. it makes a huge differance on how u feel. i dont really get migraines anymore. but its also been 16 years since all my surgery. so hopefully u will find the same thing. im not sure how big mine was, since i was pretty young, but it was a fair size, and now we can just barely see its there with a ct and mri. to check on it, i have to have an angio. it sound like yours is similar to mine. mine is in the left side of the back of my head, which is the optic lobe of your brain, and thats why my vision has been effected to much. when i would get a migraine, i couldnt see. and it would last for atleast 3-4 days. haven had a bad migraine for a very long time. i was taking amitryptaline for years, and i just recently came off it in december, and since ive been off it, i have lost 40 pounds. it makes a big differance, but my headaches arent bad anymore, which is nice. i found out not too long ago that the medication is used to treat bolemia, so thats why i have gained so much weight in the years i took it. but it was the only thing that helped, so i just dealt with it. hopefully your symptomes will lessen as the years go by. its a hard thing to go through. but like u, i still have the avm in my brain, where as most ppl find it by it rupturing.
I am so happy to share with you that I had stereotactic radisurgery (CyberKnife treatment) in June, 2011 which was after I had had an embolization in February, 2011 to treat the small AVM that was in the right, temporal lobe area of my brain. I am so happy to tell you that I was rendered an "AVM-FREE" result just this past month - 15 months after I was initially diagnosed with my AVM after surviving a bleed back in February, 2011 - thank God!!! I've only had some of the minor side effects from the radiation treatment (CyberKnife) which was extreme fatigue for a few months and some hair loss. Pleaes let me know if you have any questions - more than happy to help wherever I can :)!