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Comment by lolo on Wednesday

I am only 16 and my avm ruptured a few months ago and I'm trying to get back to my normal life

Comment by dycha on December 6, 2011 at 7:35am

Hey, im new here. Somehow it's nice to know people who is 'similar' with me. My AVM is unruptered, and know 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 BabyGirl99 on October 7, 2011 at 5:00pm

I had a seizure this May infront of my best friend near the end of freshman yeah in high school. Now im 15 and i have had 2 grand-mal siezures alone since. Recently in the end of september i found out that i have to get open brain surgery. Idk what to feel anymore other than fear. My surgery is on the 13 but i have an embolization on the 12th...Less than a week away :(

Comment by Salena Mariee on August 10, 2011 at 12:37pm

Hey guys, im not to sure how to do this but i'll try my best. lol
Well i have AVM on my mouth ,tongue, and neck iv had it my whole life and started really getting work done when i was either 9 or 12 lol i think it was 9. i really don't pay much attention to it and sometimes forget i have it, but sometimes it just slaps me in the face when times get hard. So i came here to maybe make some friends who have an understanding of what i go through.. Hehe well im a nice person and would love to meet you and be your friend. :)

Comment by Anita Hopson on July 22, 2011 at 6:50am

I was 13 when I had a craniotomy for my avm. It was in left hemisphere of my brain and the size of a boiled egg. However I didn't really suffer with side effects until my 2nd avm 2 yrs ago. I had an embo and now I have no feeling on the right side of my body and it is a Pain bc it's hard to keep up with my son. I have short term memory loss so the majority of my school work is based stuff I learned prior to my embo. I just had gamma knife and I swear I never get enough sleep. I can also tell that the numbness is getting worse. I wonder if a leg brace will help reduce the pain caused by walking.

Comment by JessLovesPonies on July 22, 2011 at 5:06am

Had radiosurgery on my AVM in March, having some really bad side effects that only effect 0.1% people apparently (how annoying) and i'm having to take a gap year before my A levels to try and get better so i can hopefully hit the ground running and get my life back on track once i'm feeling a little stronger in the next couple of years. Would love to chat to people about their experiences, especially anyone who lives in the UK or has had gamma knife/radiosurgery as i'm sort of struggling to find info.. Much love, Jess xxx

Comment by Ashley Louise Beese on January 10, 2011 at 6:49pm

oh my avms are at my dura and brain stem. embolization treatments have been my only help.

Comment by Ashley Louise Beese on December 28, 2010 at 8:40pm

yeah i had gamma knife done at mayo clinic and that done nothing for me either. luckily my mom found a surgeon out of RUSH in Chicago that just took a chance to shut some of the avms down. my brain's better, but i had to go through a stroke too. hopefully they will stop feeding

Comment by Margaret on September 26, 2010 at 10:16pm

Hi Everyone,
I have an AVM on the right side of my brain a little larger than a baseball, becuase of how big it is it has caused my left side of my body to become very very week. I can't use my left hand very well sometimes not at all as well as my leg but I can still walk but I fall all the time, I were a leg brace, it sometimes helps. It was never in my face but I had a stroke recently that now caused my face to sometimes droop down. I have to go see a special team of docter's to look at my entire body to do a surgury that there not even sure they can perform. It was explained to me this they were going to inject a lava type substance on some of the viens and arteries to try a kill some of it to hopefully causeing more blood flow to the left side but they do not know what the out come will be. SCARY!!!! Then I have another nuerosurgeon who I have an appiontment with next month I have seen him before back when I was 16 when I first found out I had an AVM. I had Gamma-knife surgery. It did nothing I am curiose to see what else they have to offer me and if they can even help me all becuase gamma-knife did nothing but cause me pain for life in my head. All I care about is getting better for me ,my Fiance',my family and friends and hopefully make new ones on this wonderful site 8) WoW that was alot. Feel frre to talk or ask questions PEACE<3 Margaret 8)

Comment by jessica on April 11, 2010 at 3:28pm

hey guys. i had an avm in my brain but gamma killed it. id love to talk to you all and hear your stories!

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