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-   -   Port wine stain and hypertrophy (http://birthmark.org/board/showthread.php?t=421)

veraladd 12-03-2003 06:44 AM

Port wine stain and hypertrophy
 
I have a pws on my right arm neck shoulder and hand. My right arm is larger than my left. It is not out of control or disablingly large at this time. I am 20 years old too by the way. Since I have stopped growing will my arm quit growing? or will it continue to grow out of proportion? Will laser treatment prevent this? What can I do? ???

hankbartenbach 12-04-2003 01:48 AM

Re:Port wine stain and hypertrophy
 
Hi veraladd, my name is Hank, I am a 21 year old with PWS on my face and head. How exactly is is growing?
Does it look bigger at times and then shrinks? If so you have the same problem I do. When I am active my PWS gets larger because more blood is being pumped thur my body and makes my PWS look larger. Since you are done growing, your arm should be to, but you never now. Have you asked a doctor? It you go to the left of this page and under resources click on find a physician and then find the state you live in.
I live in Nevada, but am about to moving to Colorado.
Where are you located?

Talk to you soon

Hank

debra 03-26-2004 06:58 AM

Re:Port wine stain and hypertrophy
 
Hi. My 6 yr old son has a port wine stain on his face and has received laser treatments since infant. The affected side of face is growing at a faster rate than other side. No doctors warned us of this possibility and thankfully we began treatments immediately which has maybe slowed it down. I don't know but am hoping it will stop growing when he stops growing. I would like more information on hypertrophy also. I hope your arm will not worsen and that God will bless you. Debra

nickbar 03-27-2004 02:10 AM

Re:Port wine stain and hypertrophy
 
Is it BONE or SOFT TISSUE HYPERTROPHY?

I believe Laser has helped my son's hyperostosis (thickening of the bone...his skull) He has a hemangioma that is very similar though to a port wine stain in pattern and looks (yet is clearly a hemangioma).

I will continue to look for answers.

Corinne

nickbar 03-27-2004 06:14 AM

Re:Port wine stain and hypertrophy
 
Go to this website and post your questions. http://www.ktfoundation.com/whatiskts.html

Compression stockings might help. I could not find a direct answer to whether laser will help the size of your arm. Our son's derm said it is possible that once his Hemangioma is gone (from laser tx) the hyperostosis could correct itself.

Good luck.

Corinne

Lee New Zealand 03-30-2004 11:27 PM

Re:Port wine stain and hypertrophy
 
Hi everyone, Lee here all the way from New Zealand. Well I have pws on whole of right leg, some say I have KS. some say birthmark, maybe I have a bit of everything. I have had numerous lazer treatment, different machines, with no change. My right leg has grown considerably larger than my left leg, I have had 3 operations to retard the growth of the right leg. Wore a built up shoe (2cm) to school. My spine is crooked.My shoe sizes are different, in winter my leg goes blue, purple and cramps up terribly. In summer I suffer from thrombosis. I am now 36 years young (37 in 14 days...) and because of my own insecurities still single.. However I never gave up hope, that one day I would be able to go to the beach, wear open shoes etc. I am off to Wellington to see Dr Swee Tan he is a specialist. So everyone, have hope for me, and if anyone needs information please email me I will be more than happy to share with all of you...any experiences with you.

Lee New Zealand 04-01-2004 06:32 AM

Re:Port wine stain and hypertrophy
 
Quote:

Originally Posted by Lee New Zealand
Hi everyone, Lee here all the way from New Zealand. Well I have pws on whole of right leg, some say I have KS. some say birthmark, maybe I have a bit of everything. I have had numerous lazer treatment, different machines, with no change. My right leg has grown considerably larger than my left leg, I have had 3 operations to retard the growth of the right leg. Wore a built up shoe (2cm) to school. My spine is crooked.My shoe sizes are different, in winter my leg goes blue, purple and cramps up terribly. In summer I suffer from thrombosis. I am now 36 years young (37 in 14 days...) and because of my own insecurities still single.. However I never gave up hope, that one day I would be able to go to the beach, wear open shoes etc. I am off to Wellington to see Dr Swee Tan he is a specialist. So everyone, have hope for me, and if anyone needs information please email me I will be more than happy to share with all of you...any experiences with you.


sanja 04-05-2004 02:28 AM

Re:Port wine stain and hypertrophy
 
Hi Lee! My name is Sanja. I am female, 36-year-old. I have PWS on my right leg too. I used to go to the beach when I was a kid but I had to cover my right leg because of the sun. The doctor said it mustn't be exposed to the sun rays. I miss so much going to the beach and having a sunbath. I never learn to swim because of PWS. It must not be hurt cause it might begin bleeding. I cannot walk or stand too long. As I live in Bosnia and Herzegovina I dont go to the doctor anymore. We miss a lot of specialists here. But I plan to move to the States and hope to get some medical advice there. Feel free to email me any time.
Sanja

veraladd 05-07-2004 05:48 AM

Re:Port wine stain and hypertrophy
 
Thanks to everyone for replying. It is bone hypertophy but i think it might also be soft tissue cause it seems a little chubbier too. I couldn't say whether or not laser will stop hypertrophy. Getting the treatment so early on might though. I hope everything works out for all of you. I have had MRI's and been talking to doctors but it doesn't seem like anyone knows anything. So If anyone finds out anything let me know.


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