Last post Thu, Jun 12 2008 1:07 PM by melandersmith. 16 replies.
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.
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.
What does AVM mean?
Daisies
I looked it up but can't explain it.
http://www.upmc.com/services/MinimallyInvasiveendoNeurosurgeryCenter/OurPrograms/Neuroendovascular/AVM.htm?gclid=CNfg-rrX548CFRuhFQod5nFU7A
Thanks Dave.
You're welcome.
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.
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
hi there I also had AVM rupture when I was 14 yrs old. What is SCI? I trying to learn all this new lingo. Just joined the site yesterday.
Hi Kristin. SCI is spinal cord injury.
Well now I know what SCI is - spinal cord injury thank you. Yes, my AVM also caused SCI. My AVM was actually located on my spinal cord - just below my cerrebellum..not sure what part of the spinal cord that is. The doctors explained to my parents that it wasn't so much the rupture of the AVM but the removal of it. I have tremors in my left side mostly, my left side of my body was paralyzed after I woke out of my coma of 31 days. I also have TBI from the rupture.
Not an AVM rupture, but my SCI results from ischemia. I tore the descending artery to my heart, and during surgery to repair the artery my blood supply was clamped off numerous times, resulting in killing my spinal cord at T-6.
This months issue of Action, published by United Spinal Association, has an article about a woman with the same condition as me (except she, apparantly, doesn't have an aneurysm, too).
I found this article of particular interest for two reasons: 1. because I don't hear about others who have had a spinal cord AVM rupture very often, and 2. the author and subject of the article, Sheri Melander-Smith, writes about how she completed her education and eventually returned to work after the rupture, the regrowth of the AVM, several embolizations, surgeries and paralysis. She also writes of the accomodations that were made for her by her employer.
Membership in the United Spinal Association is free of charge, and a subscription for their Action magazine is also free.
This is a link to their website: http://www.unitedspinal.org/
This is a link to the article: http://www.unitedspinal.org/publications/action/2008/05/12/working-story-turning-adversity-to-advantage/
A woman from my hometown had an AVM malformation and suffered a SCI. I think she also had a TBI, but I'm not sure. She was such a nice lady, very active, with two young daughters. You never know when your life is going to change forever, do you.
Becky
Hello Sister in avm...
My name is Sheri Melander-Smith
The one you mentioned in the above article. Thank you for reading my story. I did also have an aneurysm but didn't mention it in the article. We have a lot in common. It is a blessing to meet someone else with the same situation as mine.
Owh, if Donald Trump is reading this please email me as well!!! : ) - see the first post if you don't get the joke......
Sheri
