Info Appreciated

Hey---Im new to this site...Just found it tonight. Im looking for some info if anyone has it. Although Im kind of old to be looking at change here (late 40's) :P I am trying to locate a good Doc in Houston in regards to removal of the port wine stain, so if anyone knows one let me know k? I have a stain that covers most of the left side of my face and oddly enough I am more concientious of it now than I was as a kid...Weird huh? Welp Im off to bed. Im really curious to read others stories tomorrow as I have really never known anyone else that has one of these things. Take care and have a good night!

[hankbartenbach]

Hello,

Welcome to the site.

I am 22 with PWS/SWS.

Here are some doctors I found in the resource section of this group.

I saw four or five in Huston. Choose which doctor you want. Remember you can always go for a second opinion.

Edward D. Buckingham, M.D.
13376 Research Blvd. Ste. 124
Austin, TX 78750
512-401-2500
info@buckinghamfacialplastics.com
www.buckinghamfacialplastics.com
Facial Plastic and Reconstructive Surgery
Specializing in proliferative and involutional hemangiomas, port-wine malformations, lymphatic malformations, venous malformations, and A-V malformation.

Moise L. Levy
6621 Fannin
CC 620.16
Houston, TX 77030
832-822-3718 (Secty)
fax: 832-825-3722
We have a full complement of specialists with expertise in such lesions at our institution (TX Children's Hospital) and will see some adults, as well.


Carla Giannoni, MD
Pediatrics Otolaryngology
1102 Bates Suite 340
Houston, TX 77030
832-822-3267

Jay Burns, MD
6300 Harry Hines Blvd
Suite 600
Dallas, TX 75235
214-456-8888

James Nigro, MD
7737 Southwest Freeway
Suite 380
Houston, TX 77074
713-981-4444

Denise Metry, MD
6621 Fannin Stree, CC620-16
Houston, TX 77030
832-822-3718
A pediatric dermatologist currently involved in research on hemangiomas.

Nancy Rollins
nrolli@childmed.dallas.tx.us
214 456-2809
1935 Motor St
Dallas, Texas 75235
A pediatric interventional radiologist at Childrens Medical Center at Dallas with extensive experience in the use of sclerotherapy for lympgangiomas and venous malformations as well as arterial embolizations for hemangiomas and AVMs.

Joseph Edmonds
6550 Fannin Suite 2001
Houston, Texas 77030
713-796-2001
Texas Children's Hospital
Baylor College of Medicine, Clinical Assistant Professor
Department of Otolaryngolgoy and Plastic Surgery


Talk to you soon, and hope this helps.

Hank

[nickbar]

just to let you know there are many members here that have seen dr. burns for laser tx. I know he isn't near you...but thought you should know.

Corinne

Thanks for the information and the lengthy reply Hank. I appreciate the time you took to enter all that info* ;D. Have you had any luck with the laser or have you tried it? Just curious....I wish they had that technology when I was your age.....I mighta been a handsome outfit...lol* ;D.....later bud----Well Now---I feel like a nut askin you that--I have been looking around in here (2 hours after I posted the first paragraph) and see you have had your share of treatments and such. Let me say that I admire you for your courage and wish you much success in your future surgeries my young friend. Take care and God bless you----

[hankbartenbach]

Hi Texas,

I am a computer goro. I did not type out all those doctors I edit copy and pasted it on the post. Took me less then a minute.

Boy have I done laser treatment. I started 17 years ago when I was 5 years old. I have done well over a hundred treatments in that time. About 14 years off and on.

So I do not have to do a long post (lol), if you look in the youth and teen section in the story section you can see what I have gone thru with laser treatment. To learn about my surgery with Dr. Waner in the PWS section click on the subject I made Surgery with Dr. Waner on TLC and you can read all my current updates from my current surgey.

Remember looks are not everything. If someone can not except you for who you are you do not need them.

Talk to you soon.

Hank

Hey Mr Hank! Man oh man I can see you could probably write a book by now on laser treatments!.. This site has enlighted my so much in just the hour Ive spent looking at it. I thought those treatments would be like 10 or so and be done with it buttttt it looks like Im in for a surprise.* : I waited a little to long to get self concious about this thing huh? lol...jk---Listen cat....Your right about people accepting you....Ive made lots of friends in my near 50 years and have had a successful life so far even with the "difference" I (we) have as opposed to most others. Your dead on saying "if they cant accept you then you dont need them." Your right.....You will find as you get older that attitude, personality and integrity can go a long way even without perfect looks. Keep up the fight bud and keep up that positive outlook. From what little Ive read so far youve made a difference in a lot of folks lives....not everyone can say that........

[hankbartenbach]

I saw what you put on your reply on the other topic.
You have Sturge Weber Syndrome (SWS)?

I have a few friends with SWS/PWS that are older then you. One of them is in her sixtys and lives here in the same town as I. She is a member of this website but is not active.

Treatment on PWS (Port Wine Stain) is a on going task. I will be doing it for the rest of my life. Even if I get it completely removed I will have to get touch up treatments every 10 to 15 years.

Talk to you soon.

Hank

I am a 41 year old female....
Well my birthmark is all down the front of my left leg and on my left side and then all the way up my back.
It has been very hard emotionally ......

If you ever wanna chat let me know