Please Read/Reply! Diagnosis help + pictures

[Island]

First of all let me say that I am overwhelmed by the amount of support on this forum. I've gone 20 years now thinking that my case was rare and that I wouldnt have anyone to talk to about it. So, thank you to everyone on this board who cares enough to help!

I started this thread because now after reading the various topics for the past few days, I am confused about what I might have (i.e. hamangioma, pws, etc). I know it might be long to read but I'm going to tell you everything I know/remember about my case, and even provide pictures. I confused myself by reading about each different type and now I'm not sure what I have. As a 20 year old woman I'd love to find out, and see what options I have. I will also e-mail this to one of the specialists. Please, any feedback would be greatly appreciated on my long-winded topic!
Note: I am going to write everything that I think might be tied to my birthmark, even if it doesn't quite make sense. I dont exactly know if one effects the other, though.

-History-

*I was very sick as a newborn.
*A small spot appeared on my right thigh at only a few weeks old. My parents were told it was a strawberry, but it grew. My parents were told that it was a Hemangioma and that doing surgery on it would mean taking out most of my leg (it would look like a shark bit into me)
*Looking at pictures and from some memories, I recall that covered from my belly button all the way past my knee. It was bright red in color and my leg seemed swollen.
* The doctors told my parents that it affects the lymph nodes (sp?) in my thigh, thus my immune system is lower than average. They also said if I were to cut it somehow, it would bleed profusely.
*It was painful. Any sort of clothing touching it would bother me. (My family tells me I went an entire summer running around naked because it bothered me so much)
* I had hip surgery as a child because my thigh and hip muscles were too tight and I was unable to straighten my leg (forgive my lack of correct medical terminology)
* Later around 12 years old I had knee surgery (same leg) because the leg with the birthmark was longer than the leg without. It was corrective surgery to scrape the growth plate. Now, my legs are even.
*I’m not exactly sure at what age the ‘birthmark’ regressed, but I’m assuming it was 5 or 6. It shrunk and paled in color, but still covers most of my thigh and is still noticeable.

-Now-
* Birthmark has not changed in the past 15 or so years.
* It is a pale red color in most areas, darker in some, and on my upper thigh I have a small (about the size of a button) raised purple mark.
* It is not tender in most areas, but does hurt if pressed on rather hard.
* If I do not work out every night and keep strengthening the muscle on that leg, the birthmark area gets very sore. It becomes tender to touch and it is near impossible to walk. This gets worse as I get older because I am more and more active, and it seems the more active I am, the more it hurts when I don’t workout for one reason or another.
* The birthmark has affected the muscle in my leg and I have walked with a slight limp my entire life. It is obvious that I favor the other leg. Change in the severity of the limp can fluctuate based on how much I stretch and workout.

Pictures:

http://i15.tinypic.com/2wpqf5c.jpg
http://i15.tinypic.com/2rz6we8.jpg

I would have taken more full-length pictures but I didnt want to post pics of me in my underwear:-\ haha! Sorry about the quality of the pictures!

I know this is a lot to read but I welcome any and all thoughts on it. Like I said, I will email this to a specialist listed on this site when I get a chance. I wanted to have experience-based opinions as well, though. But I'm wondering...what is it?? why didnt it ever shrink more??

[missy]

Hi there,

You need to copy and paste this to Dr. Rosen:
http://birthmark.org/experts.php

None of us would be able to offer more than opinion. I understand that you want experience based opinions, but they can be very misleading when dealing with birthmark diagnosis.

But, Dr. Rosen is probably the expert you want to send this to.

Missy

[Island]

Ok, thank you missy!

[Island]

I got a weird error message when sending it thought...something about headers, and a warning code about the email already being sent. Is that normal??

[missy]

You just hit the submit button twice. It went through!

Missy

[Island]

uh oh. haha. I tried sending it three times when I got that message. He's not going to be very happy when he finds 10 of the same email. oops

[nickbar]

I am glad you emailed Dr. Rosen. He seems like a wonderful caring doctor. He has been very open in offering help to any of our families.

You also might want to send the email and photos to Dr. Delfinian The KT expert.
Corinne

[Island]

Okay nickbar. Thank you!

How long does it take to hear back? I'm worried that the email might not have gone through.

[nickbar]

Let us know if you haven't heard anything in about two weeks. Hopefully sooner... Missy can tell if the email actually went thru.

Corinne

P.S. Sorry we can't tell you what your b-mark is...we are just simply not doctors, not vb doctors... Based on pictures and the info you posted, I would highly doubt this was/is a hemangioma. PWS can change with hormones, weather, age. Anyway...I hope you find your answers soon and can find some peace in knowing and having a plan (even if the plan is to leave it alone)... I wish you happiness and peace. The b-mark doesn't define you! I can tell you are a beautiful person.

C

[Island]

Thank you very much. You have no idea how much what you said means to me! I have mixed feelings about it MAYBE not being a hemangioma...firstly that makes me happy because PWS can sometimes be faded with lasers, right? But, that means that I've been mislead for 20 years about what it is.

I'll let you guys know if I haven't heard back in a couple of weeks.

Thank you again