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AVM Survivors Network

Me and my AVM would like to say hello!

#21

Hi Cheryl,

Nice to meet the hole in your head! What a story you have…

@Chester09 I’m doing really well. One year after my bleed, live is more or less back to normal for me. I’m working again full time and my problems are minimal, so I cannot complain. My balance is not perfect what is a bit frustrating when I am skiing/hiking/climbing, but in daily live I’m not more clumsy than I used to be :slight_smile: I had an angio in October and the blood seemed to be flowing through my brain in a normal way.
I was very lucky….

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#22

Greetings to all. My AVM bleed occurred back in 1977. I was 20, and had no indications of this happening. My eyes had dialiated earlier that day but I had other things on my mind. Later that night is when “ my party began “ I got very dizzy and what I call a Rupture came a few minutes after. A headache that is difficult to describe. I was in college at that time and a school break for Turkey just began. The local Hospital wasn’t experienced to know a AVM. After a few hours of observation, they sent me home. ( Roommate did the driving. ) Next day “ I drove home “ with my roommate because he lived a mile from me. ( 3 hour trip ). My Parents were waiting for me. Had a Dr’s appointment set up and after a full checkup and questions. He said I had to get to a specific Hospital in 3 hours for a week of observation. ( He had a Hunch ) . Frustrated, My father drove me to the Hospital and by the time I got there I was again having with my eyes again. The street lights really bothered them and I was rushed into a dark room by wheelchair. That night I had another headache ( forgot to say that the headaches came on my left side of my head ) they had keeper me heavily sedated for a week and had me in surgery for 8 hours. Had a 3 inch diameter section of the left side of my head removed and 28 clips put in. They weren’t sure how I would come out. This type of surgery was only 2 years old. I have a Dent on the side of my head because they had to make the bone smaller to put it back. Please note that I didn’t know what they had done until 2 weeks afterward. I had to learn how to talk, walk, had a partial amnesia that lasted 8-9 months and work on my right side because of a mild paralysis. This all took me about 18 months. ( I also got a staff infection which had me at the Hospital for a total of 14.5 weeks. First 4 was for the AVM). I also got post surgical Epilepsy and ADHD. Other wise I am Extremely Lucky to be alive. I have no physical problems due to the AVM. Just keep a smile on your face no matter what!

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#23

Patrick, thanks for sharing and I agree there needs to be better prediction and I suppose lower cost / barriers to MRI or another detection method. I too had a Davf, it was unruptured, I had headaches that concerned me as I rarely get them and asked my GP for a MRI. Due to family history he decided to order one and that’s how it was discovered. After embolization the doctor now says the blood flow is normal and the avf is closed. I’m very fortunate and thank god. In many ways - divine intervention.

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#24

Hi Patrick,

It has been a long time since I’ve logged in. I read your story today and needed to reply.
My AVM rupture was 10 years ago (17 Dec 2008) when this site was first launched. I was 34. Woke at 3am with THE headache, managed to call a friend who arrived minutes before my stroke, emergency op to remove AVM within hours. Was very lucky. Only deficits are sensitisation on left side, loss of left peripheral, fatigue, low resilience to noisy, loud, busy situations. But I was very lucky…

And I didn’t know I had an AVM but the evidence was there for 34 years… born with port wine stain birthmarks above and behind my right ear. Had several ‘warts’ removed from the area as a child… they would just bleed for no reason…Not breathing at birth, stopped breathing randomly at 18months, suffered from heat stroke with intense vomiting from early years, often had dizziness, fainting, blurred vision, head aches, and general feelings of unwellness. I was told it was vitamin B deficiency and I worked too hard staring at a computer screen… after the event my birthmarks made me a textbook case scenario according to some GPs…My neurosurgeon told me it was stress and to live a low stress life… so 18 months later I had twins! not what the doctor prescribed :slight_smile:

I think it’s great if you could compile evidence of symptoms that show an AVM could be present.
Good luck with your recovery. It’s an ongoing thing but it does get better.

Look forward to reading more on your research.
Caroline

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