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 I’m feeling much better, although I still feel some minor pains in the area the AVM was. I’m learning to be patient with myself as I try to become strong physically, and deal with my intellectual limitations.

I’m grateful that my friends were able to take me to the emergency room when they did…I’d hate to imagine where I’d be if they weren’t able to help me. I’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 haven’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 cm…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 avm…doc is not sure why its there…we are both hoping its the braking down of the avm…:)will know then and keep everyone posted,.it should just be a change in the avm…: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 had…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 cm…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 avm…doc is not sure why its there…we are both hoping its the braking down of the avm…:)will know then and keep everyone posted,.it should just be a change in the avm…: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 had…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 didn’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 cancer…and gave me the option of “wait and see what happens”.
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 technology…
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, 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.

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