We are AVM survivors, here for your support.

Survey: What year and how old were you when your AVM occurred?

I'm trying to do an unscientific survey of the earliest known AVM as it pertains to members of this Forum. And, the purpose of my survey is to determine how many occurred either the same year as mine (5/17/1988) or prior. The reason for my curiosity is because in 1988 when I suffered my AVM the technology which existed then was nowhere near what it is today. Furthermore, the statistics for complete recovery were literally quite astounding as compared to today's success rate. I might also add that my age in 1988 was 28 years old and I just celebrated my 50th Birthday February 1st.

After my complete recovery I was and still am motivated to write a book about my experience with a full detailed account of my life prior to and after suffering an AVM. Although, writing a book is not a new idea however, the fact that I was able to make a full recovery is remarkable to many people. Additionally, I did not have any permanent disabilities and my life has proven to be an inspiration even still today to those who have known me and for those who have just gotten to know me. After having spent the past 20 years in the Aviation industry I retired in 2006. Today I'm a successful entrepreneur as President & CEO of my own company.

If anyone else would like to weigh in on this question or wish to comment, I welcome your participation.

Thanks,

Michael

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Replies to This Discussion

Permalink Reply by Armand on July 3, 2010 at 5:41pm

I had a seizure in 1986 and another in 1988. It was 1989 when I had surgery and then gamma knife surgery. I was 32 years old in 1989 when those surgeries happened. So, I'm 53 now and older than you (but not much).

I understand some of your thoughts. Back then, this was a new phenomena. We were very lucky that they even found the AVMs. There was only a couple of surgeons doing the work. Gamma knife had just been invented. Nobody knew about much of anything.

I've had nearly 100% recovery. One thing that has helped me understand how lucky I have been is this website. This has taught me to appreciate more of how luck I have been. The problems I've had that I thought were so bad are nothing in comparison to some of the other people on this site. So, I have to thank the people of this website for helping me put my troubles in perspective.

My problems are small ones. I was moving up the corporate ladder at high speed destined for higher levels. After the surgery, I was no longer able to function with groups of people. Things just didn't work right in the brain. Eventually, I took a step to the side and ended up being a specialist.

Slowly, I'm getting better at dealing with people. It's an uphill battle, but it's one that can be accomplished. It's a small problem compared to some of the others and it's one that I can fix.

I was wondering how long it took for you to have full recovery. As I remember, it was only about 80% after two years. The rest of the improvements have been slower.

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Permalink Reply by James Campbell on July 5, 2010 at 11:48am

My fiancés AVM was found in July 2008 after a haemorrhage, she was 32 at the time

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Permalink Reply by Barb V. on July 5, 2010 at 9:05pm

Hi Michael,
Our son was diagnosed last March of 09. He was 11 at the time. He just had his first MRI after Gamma Ray treatment and doctors are amazed at how much it has shrunk. They won't give us a %, but are pleased. He never had any symptoms, it was found by accident on MRI since he has had seizures since 03. Hope you get lots of cooperative people for your book. Barb

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Permalink Reply by Ashlie Campanelli on July 7, 2010 at 10:58pm

22 years old march 2006, first bleed, misdiagnosed as a stroke from a blood clot. 24 years old, august 2008 seizures started and surgery was performed two days later. i am now 26 years old, and my left side is still physically recovering from paralysis caused by the craniotomy

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Permalink Reply by michael santos on July 10, 2010 at 12:37pm

I was four years old when I had my bleed. It was in 1980. I was in pre-school when it happened.

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Permalink Reply by Chris Safford on July 10, 2010 at 1:15pm

I was 29 yrs old when I had my first bleed. I know technology wasn't what it is today. Mine didn't show up on a CT scan! Finally, in 1986, the neurologist I had finally sent me for an MRI. He looked at it & said nothing was wrong at the time, but when he read the radiologist's report, he was very serious about it! On the Angioma Alliance website, the founder's daughter, who was a baby at the time, had 13 AVM'S in her brain, all of them arterial, which were removed surgically.
The Website is angiomaalliance.org.
Connie the leader might be able to help you.

Jan Verstraete said:

My AVM ruptured in 1982 (March 7). I was 18 at that time. I had a craniotomy in 1982 and this was followed by 2 embolisations in 2005 and 2006.

Jan Verstraete

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Permalink Reply by Jessica Ables on July 10, 2010 at 1:20pm

Michael.
At the time of my bleed (Sept 2009) I was 24. Best wishes on your book.

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Permalink Reply by Julie on July 10, 2010 at 11:13pm

Age 27 in 1985. Suffered headaches since childhood, no one took it too serious...active child regardless. Cran in 85, thought they got all of it. Pain continued. 2009 stereo used to try to kill the remaining of the avm which was found. Return to doctors in Sept this year to see what process has/has not been made.

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Permalink Reply by Nell Chaudoin on July 14, 2010 at 4:41pm

I was nine (1995) when i first started feeling pain in my hand. Since then I've had multiple surgeries and procedures to reduce the pain and discomfort.