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Comment by Emily K on January 20, 2012 at 10:32am

Hi Everyone, I have an AVM Graded 3-4 on my right frontal lobe. I had Gamma Knife in May, and had fairly frequent migraines afterwards for a number of months. I still get them now and then, but less frequent than before. For the past few weeks, I have had tingling on the left side of my body, from my legs to my face. Sometimes it is worse than others, and comes with being in a 'fog'. The worst one I have had, my husband was waking me up, and I knew he was there, but he said I was just starring, I was trying to talk to him but I couldnt speak. It only took a few minutes for me to 'come to' and talk to him slowly, but scary anyways. I have had a few of these 'episodes' a week for the past 3 weeks or so. I have an appointment for an MRI and a meeting with my Neurosurgeon in 2 weeks, but I am just wondering if any of you have had any similar symptoms with having an unruptured AVM. i always feel like I'm in fear of the "what if this is it..." when I have these episodes. If any of you have felt like this, what was the outcome?
thanks for your help everyone! :)

Comment by dycha on December 6, 2011 at 7:37am

Hey, im new here. Somehow it's nice to know people who is 'similar' with me. My AVM is unruptered, and now i confuse which medical treatment should i take. Mine's not really big it's on left-occipital of my brain. I have headaches everyday and sometimes severe ones. I'm from Indonesia, here in my country, surgery is the only option we had currently. If we want to take Gamma Knife we have to do it outside of the country. I'm sixteen and i'm in the last year of my High School.

Comment by marcylynn on September 25, 2011 at 4:34pm

Daniella-I have been so undecided about my AVM on what to do for the past six years! It is all very frustrating & I do research on my options almost daily! I was told my AVM is inoperable & to just enjoy life and wait and see what happens. I am getting a second opinion next year & I'll take it from there. I wish you luck on your decision and please keep us posted!

Comment by Daniella on September 25, 2011 at 3:36pm

unruptured AVM, Grade 2 about 3cm in size. I have no side effects accept swelling behind eye's. I have 3 options, leave it, Gamma knife or Surgery. What do you do? how do you decide?, how do you learn to leave with this in your head and what could happen.......its all very confussing....

Comment by Dean on September 1, 2011 at 12:38pm

After consulting with two neurosurgeons and a radiation oncology MD I have decided not to treat. There is no data on someone like me, who at 58 ahs never had even a symptom of the existence of my two AVMs. The risks of having side effects from the radiation surgery far outweigh the risks of not treating. If I have a bleed. I can still seek the same treatment I was looking for. I am comfortable with that decision. Three months ago I didn't even know it existed. I don't know if that will turn out to be the right decision, but as the neurosurgeon said, I am at far greater risk riding my Harley Davidson than I am from to AVM.

Comment by Suzy E on September 1, 2011 at 10:41am

Wait marcylynn already said thanks for sharing. Sorry about that. :) I repeat things a lot...lol. But thanks too! Ok that was three...

Comment by Suzy E on September 1, 2011 at 10:38am

Hey Libby! Always wondered what would have happened if I never had the surgery. Would love to hear the results of this. Thanks for sharing!

Comment by marcylynn on September 1, 2011 at 10:06am

Thanks for sharing! I plan to give them a call!! And I think I had tried contacting someone regarding the ARUBA trial but never heard back from anyone. Hope everyone is doing well!!

Comment by Libby Hoagland Berridge on September 1, 2011 at 9:45am

http://neurosurgery.washington.edu/research/trials/malform.asp

This is the link for a study getting underway that is comparing the outcome of people with AVMs who treat them and people with AVMs who don't treat them. Perhaps someone is interesting in joining. And there is another similar study already underway called the ARUBA clinical trial. NOt sure when the results will be in and tallied.

Comment by Suzy E on July 6, 2011 at 2:01pm

Melissa,

Yes' I'm very relieved that it's out of my head. I thank my doctor every day for his surgical ability. It quite literally saved my life.

Right now I can drive when I wear my prism glasses and along with my strong work ethic and my education and experience, I seem to land jobs but keeping them is another story. Right now I'm unemployed again.

I was about to post a letter I want to send to the Social Security Administration to help in getting Social Security Disability income (SSDI) and to get some feedback from folks. I know it's long but it tells my whole story. Best of luck to you and I know you'll make the right decision.

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