New Here and Have Questions - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary Gala Friday, October 10, 2014 in New York City

VBF 2014 Annual Conference Saturday, October 11, 2014 in New York City

Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > Individuals Living with Birthmarks > Adults Living with Birthmarks

Reply
 
Thread Tools Display Modes
  #1  
Old 11-22-2010, 05:07 AM
Chickadee Chickadee is offline
Junior Member
 
Join Date: Nov 2010
Posts: 2
Question New Here and Have Questions

Hi everyone,

I just found this great, informative site, and have spent some time reading, but I haven't found anything that answers a question I've got.

I have a spinal cord AVM and aneurysm. The AVM ruptured a few years ago and both the malformations were embolized four years ago. The embo 'obliterated' the AVM, but not the aneurysm. My latest angiogram two months ago shows the AVM has grown back, and I'm hoping it will be embolized again in a few months. These are at the C-7 to T-2 levels and are intramedullary (inside the cord).

I was born with a red (sometimes purplish) mark on the back of my neck that goes up into the hairline a bit and extends down to about C-5 or so. My mother had told me it was called a stork bite and it was never a big deal to me.

In the last year or two though I've been wondering if there is any kind of connection between stork bites and AVMs like the one I have in my spinal cord. Also, it didn't occur to me until recently that maybe I should show it to my neurologist and neurosurgeons - I don't know if it's something they need to know about or not?

In light of the fact that I have the two malformations I'm wondering if this might be a PWS, and can I tell the difference, or would the neurologist be the one to tell?

When I press on it the spot where my finger was lightens and then turns red again - don't know if that means anything.

I would appreciate any information anyone can give me about this.

Thanks for reading this.
Reply With Quote
  #2  
Old 11-22-2010, 12:37 PM
missy missy is offline
Administrator
 
Join Date: Apr 2006
Posts: 1,727
Default

Hi and welcome!!

From what you describe, it does *sound* like a PWS but you need a physician to look at it. And, yes, you do need to point it out, even if it doesn't have anything to do with the AVM.... your physicians do need all available information.

You might write to dr. nelson (pws expert) or dr berenstein (avm expert) via our ask the expert:

http://birthmark.org/experts.php

either one of them, both probably, might have some insight!

Let us know what happens!!

Missy
Reply With Quote
  #3  
Old 11-28-2010, 05:52 PM
Chickadee Chickadee is offline
Junior Member
 
Join Date: Nov 2010
Posts: 2
Default

Hi Missy,

Thanks so much for your reply.

I'm definitely going to make a point of showing the mark to my doctors the next time I see any of them, and I will also check into asking either Dr. Nelson or Dr. Berenstein - what a very cool feature.

I'm sorry it took so long for me to get to see your post - I got so sidetracked with Thanksgiving happenings. Hope everyone here had a wonderful Thanksgiving!
Reply With Quote
  #4  
Old 11-28-2010, 11:14 PM
missy missy is offline
Administrator
 
Join Date: Apr 2006
Posts: 1,727
Default

That's OK. I got sidetracked by Thanksgiving too! Hoping you had a great one.

Missy
Reply With Quote
Reply


Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump