Wrong Diagnosis

Cinderella22 · #1 09-03-2008, 02:55 PM

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!!

KristieinStMarysGA · #2 09-12-2008, 11:21 PM

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.

Sue · #3 09-15-2008, 12:23 PM

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

sweet pea · #4 09-23-2008, 03:06 AM

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