I don't know what i should choose to do?

I found out I still have blood flowing thru my AVM. It’s shrunk down to 9mm from 3cm after having the gamma knife radiation done.
Dr told me he thinks its safe to have it completely removed by having a Craniatomy done. He also said I could do another round of the gamma knife, which there’s still a possibility of it not being obliterated after so many yrs. I am really leaning towards having a Craniatomy, but I’m terrified of having any permanent damage done. I know having a surgery done in ur brain has major risks. I really just want to have this AVM gone out of my life and move forward.
I told my self I was never going to have the Gamma Knife done again bc I had extremely bad after effects of flown blown convulsive seizures. These have effected my memory and right side of my body. I had to have someone at my side for 6 months at all times. It was horrible.
If u or anyone has gone thru a Craniatomy can u tell me what ur experience was?

Hey Rosie, I am sorry u had so bad side effects from ur GK, but as every AVM and every person is different , I don´t know what to tell u. I chose to have a craniotomy because they told me with gk I would only have a 60-70% chance of total obliteration within 2-4 years, but if it wouldn´t have been obliterated then they wouldn´t have done anything else. Although my AVM was very large and deep, I choose to have the crani, becoz I had a very good and competent Professor who told me he would do it with a 90% chance of getting out without sideeffects. He was almost right, coz he did a great job , but I lost 25% of my vision on each eye, but I knew there was a very high risk for that, coz my AVM touched my optic radiation. I never had heaaches, seizures or other isszes...accept mental ones like anxiety and anger and moodswings. I would talk to ur doc and think well about it. Before my surgery I thought GK would be the softer way for treating my AVM, but I myself couldn´t live knowing this thing in my head could burst anytime, I wanted it to be gone, and I ead so much about peoples issues after GK and crani- and there were many whos deficits after GK were so much worse than mine after crani.So there´s no general "best" way I think, take ur time and think about it, wish u all of luck and take care, u have been so strong all the time, u are a survivor. XXX hugs ur way. U can contact me anytime, if u have questions.

Ninibeth is right... focus on the success stories. You can find those at http://www.avmsurvivors.org/group/s

Wishing you the very best. :)

Hi Rosie! Your note caught my eye. You can get more of my history on my page, so I will keep this short. Suzy, Ninibeth and Manux are all correct. Every AVM is different. Listen to your doctors. Get a second opinion. Move forward when you are ready. I was really scared of surgery because I thought I would lose the job I loved. I opted for multiple embos. They worked, but did not completely obliterate. Over time I developed an aneurysm and then surgery was no longer an option. It was hard. It was painful. But it worked. Aside from the long recovery (6 months) and some temporary memory issues I made a complete recovery AND kept my job. I have no residual deficits and it has been 20 years. Not bad!
Mine was a dural AV Fistula (DAVF). Yours is probably different, so don't expect identical results. Get as much information as you can about your type of malformation and it's location. Then look for others with the same or similar situation. We are all here for you, so don't hesitate to ask. Just remember, your doctor is still your best source of information about your specific risks and the specific opportunities for complete recovery.

Fire Buddy