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.
My son Ryan had a bleed in June of 2007. He was at school(6th grade), had a bad headache, passed out, taken to the hospital where we found out he had a major bleed from his AVM in his frontal left lobe.
I was diagnosed in 1972 at the age of eleven and as you said things were different with regards to AVM’s. I was actually told I would not live past the age of sixteen or I should say my parents were told. It shows they really didn’t know alot about them back then since here I am at the age of 48 turning 49 this year. I had no types of surgery or procedures until 7 years ago. I am still fighting to obliterate it!
I was diagnosed in 2005 after suffering headaches and a loud swooshing noise inside my head. I had, and still have a dura AVM related to injuries in the military. Have undergone 3 embolizations and now waiting for the gamma knife procedure. I will be 78 in June.
Hi Michael, my name is Lynn and I can’t tell you that I have the oldest known case here of AVM, I can tell you that mine was discovered in May 2009 after suffering a seizure at work. I did find out, I have had this AVM since birth and I am 43 years old. My doctors are really taken by the fact that I have not had any indications before now to discover this “monster” in my head. I suffered SEVERE headache’s as a child and spent time in the hospital in Memphis TN but because no technology existed then to look inside the head, they could only treat the “headache” and not the cause. I really consider myself “blessed” that this “monster” didn’t cause a bleed or worse. I really wonder, just how many people in the world suffer from this and have no idea…My doctor’s say the AVM are not heriditary but I’ve had two family members die in the past few years from brain anuryisms (spelling, i"m sorry). Do they really know as much about the AVM’s as they say, has that much research been done? How do we find out? Anyway…good luck with this mission and let us know what you find.
You’re absolutely correct Lee Ann about the limited knowledge which existed several decades ago and in my case it was a matter of doing the best they could with the knowledge they had at the time. Hopefully, your situation will improve with today’s advancements in medicine and as I remind everyone it has much to do with attitude than anything else!
Kind regards,
Michael
PS Congratulations on your 49th b’day as I just turned 50 this year and I feel better today than I did 25 yrs. ago!
Lee Ann said:
Hi Michael
I was diagnosed in 1972 at the age of eleven and as you said things were different with regards to AVM’s. I was actually told I would not live past the age of sixteen or I should say my parents were told. It shows they really didn’t know alot about them back then since here I am at the age of 48 turning 49 this year. I had no types of surgery or procedures until 7 years ago. I am still fighting to obliterate it!
Thanks for sharing your comments! My personal experience has taught me that much of what doctors know today is obviously a direct result of past patients and new technologies which have emerged to assist with early detection. However, it seems all too often that the word “sudden” is a common description of an AVM event.
My wish is that the type of blog which we are taking part in gets attention by people around the world and hopefully an awareness to AVM’s is made more public to people around the world.
Kind regards,
Michael
Lynn Whitley said:
Hi Michael, my name is Lynn and I can’t tell you that I have the oldest known case here of AVM, I can tell you that mine was discovered in May 2009 after suffering a seizure at work. I did find out, I have had this AVM since birth and I am 43 years old. My doctors are really taken by the fact that I have not had any indications before now to discover this “monster” in my head. I suffered SEVERE headache’s as a child and spent time in the hospital in Memphis TN but because no technology existed then to look inside the head, they could only treat the “headache” and not the cause. I really consider myself “blessed” that this “monster” didn’t cause a bleed or worse. I really wonder, just how many people in the world suffer from this and have no idea…My doctor’s say the AVM are not heriditary but I’ve had two family members die in the past few years from brain anuryisms (spelling, i"m sorry). Do they really know as much about the AVM’s as they say, has that much research been done? How do we find out? Anyway…good luck with this mission and let us know what you find.
40 years old, august 2009; found avm in my head due to a bleed; i have been a legal assistant for 18 years; very interesting to hear everyones different stories.
Hi, I was 17 (1974) when I found out I had AVM. My 1st Epilepsy Seizure aged 11.
In 1974 I had my 1st CT Scan when the AVM was found.
May 2005 aged 48 I had my AVM removed by Surgery. My last Seizure 2006 I had full recovery.
I got my 1st Car Licence 2006 Now 52 I now have Black Licence .
Yes indeed Tina and what we don’t know is how many others have suffered an AVM and they’re not fortunate enough to be able to communicate in a forum like this. In addition, how many people have not been able to receive the necessary care to give them a chance for survival.
For that reason, I feel blessed and I’m thankful that I was able to not just survive but also go on with my life to accomplish the goals I set out for myself. More importantly, I’m sharing my story as an inspiration for those who may be experiencing this life-changing event for the first time.
Regards,
Michael
Tina Bodin said:
40 years old, august 2009; found avm in my head due to a bleed; i have been a legal assistant for 18 years; very interesting to hear everyones different stories.
I had my AVM on 26th April 1990, 20 years ago today. I was thirteen at the time. I had a few deficits , but have gone on to study medicine. Maybe you should start off a AVM long survivors club; something for everyone to look for forward to. Perhaps for people who survive1 ,5, 10, 25 + years. A distinguished service award or something like that.
I just discovered it this year in March, HOWEVER, I found out that in my records the hospital I was born at knew about it in 1991 the year I was born. So I was a newborn infant and 19 haha.
I wish you well and I’m glad to know at least that you’ve been made aware of it. Hopefully, it can be dealt with in short order so that you can go on to do anything you wish to do in life
Michael
Alyssa Walker said:
I just discovered it this year in March, HOWEVER, I found out that in my records the hospital I was born at knew about it in 1991 the year I was born. So I was a newborn infant and 19 haha.
MY son was 12, and it was Dec 7,2009 Spinal AVM. It is massive and still active he has had surgery and 3 angiograms Walking but with limp in right leg pain, and spasms BUT WALKING!
