anubis192 Posted July 17, 2008 Share Posted July 17, 2008 I know its a rare condition but I can`t be the only one with an Arterio Venous Malformation. I would really like to get in touch with anyone else who has this problem. Regards Joan Link to comment Share on other sites More sharing options...
The_DADDY (2) Posted July 17, 2008 Share Posted July 17, 2008 I know its a rare condition but I can`t be the only one with an Arterio Venous Malformation. I would really like to get in touch with anyone else who has this problem. Regards Joan I dont have the condition but welcome to the forum:) Link to comment Share on other sites More sharing options...
Heyesey Posted July 17, 2008 Share Posted July 17, 2008 If you haven't come across this site before, it may offer more chance of contacting people who live nearby and share the condition. I can't say as I have ever come across anyone with it, at least, not knowingly. I didn't even know what it was until thirty seconds ago. Link to comment Share on other sites More sharing options...
lubylou12 Posted September 4, 2011 Share Posted September 4, 2011 ive just found this on google, been on sheff forum for years, never seen it, my son had this condition and died at 5 days old, i was told it was very rare Link to comment Share on other sites More sharing options...
Suffragette1 Posted September 6, 2011 Share Posted September 6, 2011 ive just found this on google, been on sheff forum for years, never seen it, my son had this condition and died at 5 days old, i was told it was very rare I'm so sorry to hear that. My sister has an AVM at the back of her brain which wasn't discovered until a couple of years ago when she collapsed with a burst aneurysm (that she wasn't aware that she had). She survived which is nothing short of a miracle, and without any brain damage, and is having treatment at the Hallamshire. She has suffered from chronic migraines all of her adult life but the AVM was not picked up on despite having had a number of brain scans to rule out other causes of the headaches. I don't know if the OP still looks at this site as she has only made 3 posts, the last one being 3 years ago. Link to comment Share on other sites More sharing options...
lubylou12 Posted September 6, 2011 Share Posted September 6, 2011 I'm so sorry to hear that. My sister has an AVM at the back of her brain which wasn't discovered until a couple of years ago when she collapsed with a burst aneurysm (that she wasn't aware that she had). She survived which is nothing short of a miracle, and without any brain damage, and is having treatment at the Hallamshire. She has suffered from chronic migraines all of her adult life but the AVM was not picked up on despite having had a number of brain scans to rule out other causes of the headaches. I don't know if the OP still looks at this site as she has only made 3 posts, the last one being 3 years ago. hey hun thanks, and i know what you mean about that do, my brothers father had it al his life and no one knew at all until on his 40th birthday he walked to northern general A & E and collapsed, same here, his had burst, he died 3 days later, and just before he did the nurse was talking to us, explaining the condition, and i said AVM, she was really surprised i know about it, but my son had died of it the year before, my brothers father was there with us when he died, i look back at the pictures of him holding my son and cant believe they both had the same thing going on:mad: Its a terrible condition and actually rather rare so i was told my docs, but some people are lucky enough to survive them, and thats brilliant, i hope the op got what she was looking for:) Link to comment Share on other sites More sharing options...
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