Select a forum below to continue
Posted on: Sun, Sep 16 2007 1:37 PM
Posted by: BrokenDoNotUse Posts: 325
My SCI was caused by an AVM hemorrhage at the T-1, T-2 level in 2002.
I'm curious if there are others here (yet) who have had their injury from the same thing? I know those of us with SCI from AVM or aneurysms are much more 'rare' than those who have had traumatic SCI injuries, and I don't often encounter others 'like' myself.
Posted on: Sun, Nov 18 2007 2:16 PM
Posted by: trentdubb05 Posts: 1
Yeah I had an AVM burst at C5 in 2004 between my junior and senior year of high school. It's the most messed up thing ever... I've never found anyone like me before. I just joined this site and will be sharing my story. It touches so many people. No joke, it's even gotten to Donald Trump who called my dad.
Posted on: Sun, Nov 18 2007 2:32 PM
Posted by: Daisies1 Posts: 0
What does AVM mean?
Daisies
Posted on: Sun, Nov 18 2007 5:39 PM
Posted by: dave Posts: 191
I looked it up but can't explain it.
http://www.upmc.com/services/MinimallyInvasiveendoNeurosurgeryCenter/OurPrograms/Neuroendovascular/AVM.htm?gclid=CNfg-rrX548CFRuhFQod5nFU7A
Posted on: Sun, Nov 18 2007 6:07 PM
Thanks Dave.
Posted on: Mon, Nov 19 2007 1:21 AM
You're welcome.
Posted on: Mon, Nov 19 2007 1:31 PM
Hey trentdubb05 - wow, I have to say I'm surprised to find a reply here from someone else with the same condition.
Do you mind telling me more about your ruptured spinal AVM? Like, did you have it resected, embolized or do you still have it? Do/did you also have an aneurysm along with it?
Do you mind (if so, I understand) telling me about what kind of deficits you had from the rupture?
My entire left side, except for my arm, neck and face, were affected, and still are. I can walk, but depending on the moment, how much I've exerted myself, etc., determines how well. The numbness is crazy, and the neurological pain is intense. There are days when I think I'll go out of my mind from the pain - to have clothing, shoe, sock, bedding, etc., touch me is almost unbearable. In a way I'm used to it, but in a way I don't think I'll ever get used to it, if that makes any sense.
Both my AVM and aneurysm were embolized at the Barrow Neurological Institute in Phoenix, AZ (they said removal is too risky). The AVM was obliterated with the surgery, but I still have the aneurysm. They told me that they only see about 4-5 people like me a year, and it's so rare for me to encounter anyone with the same condition.
I'm sorry you've experienced this, too, but considering we have, and we're both here, it's nice to meet you.
Posted on: Mon, Nov 19 2007 2:09 PM
Here are some links with information about AVM, for anyone who may be interested:
http://www.worldhealthspecialists.org/whs/disorders/avms_html.htm
http://www.ninds.nih.gov/disorders/avms/detail_avms.htm#51223052
http://www.mayfieldclinic.com/PE-AVM.htm
Most Active Users
These are the users who are most active on our forums.
rainey826
Lynn
wheels4law
sandyfreytag
pambe
