Wrong Diagnosis - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  

1994 - 2014 Celebrating 20 years with 75,000 networked into treatment, over 3,000,000 views monthly on our world wide websites, virtual chapters on 6 of the 7 continents in the world, 500 families provided free lodging while seeking a medical opinion or treatment,over 400 conference scholarships awarded, 200 Day of Awareness events, 15 conferences, 12 programs (including our Ask/Accept Anti Bullying Program),10 walk/runs, 6 research projects funded, 4 physician education grants awarded, 4 college scholarships awarded, 3 Galas, and 2 International Missions Trips with over 300 treated by our international team.
Donate to VBF

Go Back   Vascular Birthmarks Foundation Forum > AVM Help > AVM Help and Resources

Reply
 
Thread Tools Display Modes
  #1  
Old 09-03-2008, 02:55 PM
Cinderella22 Cinderella22 is offline
Junior Member
 
Join Date: Nov 2007
Posts: 10
Default Wrong Diagnosis

Just wanted to update, I have always been told(15 yrs.) that what was in my entire left arm was AV Malformations. I e-mailed the asked the experts Dr. Rosen and sent him my MRI disc, I was told friday after he reveiwed that I have Klippel-Trenaunay Syndrome. I'm still in shock you put soo much time and effort into researhing a disease to find out it's something else. Now I'm just trying to get my head together to start my research over. I'm looking at it like I'm Blessed to have had some one that could give me a definite diagnosis. He had mentioned sclerotherapy? I guess I got alot of research to do!! Thank You for Your Time!!
Reply With Quote
  #2  
Old 09-12-2008, 11:21 PM
KristieinStMarysGA KristieinStMarysGA is offline
Senior Member
 
Join Date: Feb 2005
Location: St Marys GA
Posts: 132
Default

I too have been suspected of having KT Syndrome, as I have a left arm VM, with a major difference in the thickness of my left arm.

Although, I don't have a visible PWS, the doctors have yet to agree to wether or not I actually have KT Syndrome.

The one piece of information that I was given (that I found to be very helpful) was that regardless of the disagnosis the treatment was the same at least for the problems I was dealing with.

Sclerotherapy, and it has worked.


Sue,

I have a venous malformation throughout my left elbow and forearm, yes my left arm is thicker than the right, the left is also a bit longer.
I don't have a PWS, if you suspect your child may have KT I would contact one of the doctors on the main page.

Last edited by KristieinStMarysGA : 09-15-2008 at 02:21 PM. Reason: add a few things
Reply With Quote
  #3  
Old 09-15-2008, 12:23 PM
Sue Sue is offline
Junior Member
 
Join Date: Sep 2007
Posts: 9
Default Arm Thickness

I am jsut wondering.... I have a daughter with a pws that covers her left arm. Also, it is a little thicker than her right arm. Is this sort of what is going on with you guys? Can they treat the thickness with something?
Thank You
Reply With Quote
  #4  
Old 09-23-2008, 03:06 AM
sweet pea sweet pea is offline
Senior Member
 
Join Date: Jul 2006
Location: Southern California
Posts: 111
Default

Sue,

I wouldn't jump to the thought of your daughter having KT. Many times PWS can have thickness and that is just part of the birthmark and nothing else. KT usually has a number of "symptoms" involved like a large vascular malformation, varicose veins, and a length difference in the affected limb. If the thickness is a type of malformation and not just the PWS thickness, they can do sclerotherapy or another type of injection. If you want, you can try to email one of the experts on the ask the expert section. Hope all is well. : )

-Stephanie
__________________
what makes you different, makes you beautiful
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

Similar Threads
Thread Thread Starter Forum Replies Last Post
largest mark ever ,prove me wrong neo Port Wine Stain Help and Resources 6 07-08-2010 11:42 PM
New Diagnosis for my 3yr old- venous Malformation Maher2006 AVM Help and Resources 3 05-08-2009 06:47 PM
Conflicting diagnosis cjam Port Wine Stain Help and Resources 2 01-03-2008 07:42 PM
How to get a proper diagnosis? jplissa Port Wine Stain Help and Resources 3 12-30-2007 10:29 PM
what kind of doctor for diagnosis scnfld Port Wine Stain Help and Resources 3 12-21-2005 05:57 AM