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 Keith S on March 7, 2010 at 7:14pm

26 years old and November of last year (2009) I would love to hear more about your journey btw! I also worked in the aviation industry for awhile and have my pilots license!

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Permalink Reply by mary kate on March 7, 2010 at 7:38pm

26 years old when it bled in November, 2009...hey, Keith...looks like we have a lot in common

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Permalink Reply by Joe on March 7, 2010 at 7:49pm

I discovered I had an AVM in 1997 at the age of 35. I have my race car drivers license, which I got last year.

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Permalink Reply by Andrea Fisher on March 7, 2010 at 8:31pm

My avm was found when I was 23 yrs old. In december of 2006 5 cm left temporal lobe still being treated.

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Permalink Reply by Mike Vanagas on March 7, 2010 at 8:43pm

September 4th, 2003 at the age of 14 years old. If you ever write that book I’d love to read it .. I’ve thought about it myself

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Permalink Reply by Susan Troop (Lindsey's Mom) on March 7, 2010 at 8:47pm

My daughter's AVM was discovered when she had a hemorrhage in July 2009. At the time of the hemorrhage, she was nine.

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Permalink Reply by Michael A. Contés II on March 7, 2010 at 8:55pm

Hi Susan,

First, I'm extremely delighted to hear your comments about your daughter and I'm assuming the she's not had any major complications. I asked the question in this forum about age as so far I believe that I may be the oldest one who suffered an AVM at least more than 20 years ago. And, I have an idea which I presented to a well known TV personality and if all goes as planned I would like to share it with this forum someday.

Regards,

Michael

Susan Troop (Lindsey's Mom) said:

My daughter's AVM was discovered when she had a hemorrhage in July 2009. At the time of the hemorrhage, she was nine.

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Permalink Reply by Jaszi Jazz - Brisbane on March 7, 2010 at 11:36pm

found the avm in may 2007 - aged 22 - had radiation in feb 2008 - feb 2010 still there - neuros advised avm occured from birth and i have had it all my life - in the brain stem circle of willis (and later on 2 aneurysms due to the pressure increase pertaining to the avm)

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Permalink Reply by Tori W. on March 8, 2010 at 12:15am

My AVM bled in 2002 and I was 44 years old.

Sorry that isn't the kind of information you're really looking for, but I do wish you much success on your book.

I think that kind of thing would be of interest, and perhaps even be helpful, for many people who have/have had AVMs, or for their families. It is always of interest to me to read about other people's experiences with AVMs and not be limited to just 'clinical' type information.

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Permalink Reply by BeatleChick on March 8, 2010 at 12:29am

My AVM ruptured in June of 1990 (it was not known about until then), and I had surgery to remove it in September of 1990. I was 9 years old at the time.

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Permalink Reply by Jake M on March 8, 2010 at 12:48am

My AVM was diagnosed on October 31, 2001, but my primary symptoms originated early that same year. I was 24 years old.

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Permalink Reply by Susan Troop (Lindsey's Mom) on March 8, 2010 at 8:47am

Thanks Michael! You are right, she had no complications. We were home from the hospital day 4, and back in school day 11 post-op. She has no deficits! She also didn't experience the fatigue and headaches many people face. We have been very relieved and amazed at her recovery. She will be having another angiogram in April for definitive confirmation that the AVM is gone. Best of luck with your project!

Michael A. Contés II said:

Hi Susan,

First, I'm extremely delighted to hear your comments about your daughter and I'm assuming the she's not had any major complications. I asked the question in this forum about age as so far I believe that I may be the oldest one who suffered an AVM at least more than 20 years ago. And, I have an idea which I presented to a well known TV personality and if all goes as planned I would like to share it with this forum someday.

Regards,

Michael

Susan Troop (Lindsey's Mom) said:
My daughter's AVM was discovered when she had a hemorrhage in July 2009. At the time of the hemorrhage, she was nine.