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

Hi, I first knew of my AVM in September 2008, I was 56 years young. All the very best with your book, I would definately love to read it. Hope all is well. Hugs Jude.

In early to mid September of 2008 my AVM was found. I was 26 years old. In the afternoon of August 26 I began feeling minor migraine pains and the pains escalated as the day went on. The next day I had felt better, and went to work for four hours, then went to my evening class when the pains came back. The morning of the 28th I remember waking up in immense pain, yet began getting ready for work. As I got up, I remember feeling a sharp pain in the right side of my brain, which caused me to collapse. I could barely see anything. At first I thought that I was having a terrible (terrible being an understatement) migraine as I have had been getting migraines on and off since the age of 19. When I saw my doctor as week later, she even said that it was just a terrible migraine, as prescribed Ibuprofen. I believed her seeing that she was the one with the degree, but in the back of my mind, I knew something was seriously wrong. A week after seeing my doctor, I would call a couple of friends, and ask them to take me to the emergency room where I would get a CT scan, and where they would find the blood.

It was been over a year and a half since I had the GammaKnife surgery, and Iā€™m feeling much better, although I still feel some minor pains in the area the AVM was. Iā€™m learning to be patient with myself as I try to become strong physically, and deal with my intellectual limitations.

Iā€™m grateful that my friends were able to take me to the emergency room when they didā€¦Iā€™d hate to imagine where Iā€™d be if they werenā€™t able to help me. Iā€™m very grateful to have found this website and to get to know others that had been through the similar thing that I had gone through.

Michael, I look forward to reading your book!
(Hopefully I havenā€™t written too much!)

My daughter was 10 months old when her AVM was found. It had already reached 4.5 x 4.5 cm and ruptured when they found it. They were able to remove it and she is doing great. We just celebrated her 1st birthday!

I was Fifty one when it was found but it was said by the doctor to have started growing when I hurt my back in 1982 so I was 25 when it started growing and it went from T3 to C3.

My son Matthew was 15 when they discovered the avm April 8 2009 was when we were told about it. His is in the mid-lower spinal area, he had pain in his back which brought us to the dr. At this point he has had 3 embolizations and he is doing fine but the avm is still in his back . It would be great to make the world aware of this condition.

I was 39 when I found outabout my avm and am about to turn 44 in a few weeks,had gamma for it three years ago,it was 33mm when it was treated and is now 27 cmā€¦lookslie it didnt get it good,going for another look on the 16th of june for an mri with contrast because of some swelling around the avmā€¦doc is not sure why its thereā€¦we are both hoping its the braking down of the avmā€¦:)will know then and keep everyone posted,.it should just be a change in the avmā€¦:slight_smile: on steriods now to treat the problem,firs time post gamma that this happened,never had a proble with the gamma till now,and not saying its the gamma,just the only problem ive hadā€¦also a seizure for the first time post gamma,maybe all dure to the avm getting smaller,and thats what we want,:slight_smile:

Mine was discovered in 1986 at the age of 12
My 5 yr old daughter in June of 2009
8 year old in July 2009

Caroline said:

I was 39 when I found outabout my avm and am about to turn 44 in a few weeks,had gamma for it three years ago,it was 33mm when it was treated and is now 27 cmā€¦lookslie it didnt get it good,going for another look on the 16th of june for an mri with contrast because of some swelling around the avmā€¦doc is not sure why its thereā€¦we are both hoping its the braking down of the avmā€¦:)will know then and keep everyone posted,.it should just be a change in the avmā€¦:slight_smile: on steriods now to treat the problem,firs time post gamma that this happened,never had a proble with the gamma till now,and not saying its the gamma,just the only problem ive hadā€¦also a seizure for the first time post gamma,maybe all dure to the avm getting smaller,and thats what we want,:slight_smile:

I was 25 (1993) when I had my first child, after which, I felt ill. Could not quite pinpoint what exactly it was at the time, however, I was making a noise in my sleep with my tongue (that 3 different sleep labs didnā€™t know exactly what it was). Turns out it was nocturnal seizures. At 27 (1993) I had my second child, and started seizuring within 2 days, and they discovered through brain surgery that it was an AVM, in my RT temporal lobe.
Before brain surgery, they told me that it may be brain cancerā€¦and gave me the option of ā€œwait and see what happensā€.
Would be interested in what you discover.
Sincerely Kerry

my daughter had hers at 12yeaars of age in march 2010 so not much help. But I would be very interested to read this. Much more interesting than the doctors dry rendition of the statistics today compared to 20years ago

My son was 6 months old and it happened September 30, 2005.

29 year old bleed 5/5/10 right frontal lobe

I was 25 and i got rushed to the hospital bc i was out of it in the morning and my mom didnt know what was going on just that i had a bad headache the night before

1996 (Friday 13th December - Scary), 20th feb 2010 -fixed

9 Years then 22

Luke S said:

1996 (Friday 13th December - Scary), 20th feb 2010 -fixed

Mine burst in 1991 when I was 27. I was having headaches and went to the hospital. Luckily it burst there. I was in a coma for 1 1/2 years. I am now in a wheelchair.

We are the lucky ones- the ones with better drs. and technologyā€¦
Mine was at 20, in 1996.

I had just had my 12th birthday in 1990. So much has changed since then. Good luck with the book!

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, Iā€™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.

Iā€™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 Iā€™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 didnā€™t work right in the brain. Eventually, I took a step to the side and ended up being a specialist.

Slowly, Iā€™m getting better at dealing with people. Itā€™s an uphill battle, but itā€™s one that can be accomplished. Itā€™s a small problem compared to some of the others and itā€™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.

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