Port Wine Stain on right arm. - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary Gala Friday, October 10, 2014 in New York City

VBF 2014 Annual Conference Saturday, October 11, 2014 in New York City

Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > Port Wine Stain Help > Port Wine Stain Help and Resources

Reply
 
Thread Tools Display Modes
  #1  
Old 03-13-2006, 12:34 PM
Matthew K.
 
Posts: n/a
Default Port Wine Stain on right arm.

Hi Everyone.

My name is Matthew. I'm 18 and I'm living in Poland now. I was searching for information about PWS and i found this forum accidentally . I want to share with You about my problem. I didn't have major problems so far because of my appearance but it's getting more and more disturbing and troublesome right now. I've got PWS on my right arm and top part of the chest. I tried to remove it about one year ago in clinic in my country, but without result. The doctor said that it will be hard to remove, because it's deep scar, or something like that, I dont remember precisely right know. I had about 5 treatments, each time the doctor incresed dose of radiation, but unfortunately without major effect. I ceased treatments. I even dont know why. I was disappointed propably.

Right now I know almost nothing about PWS and I'd like to get to know about it much more. I sent an e-mail to English Suregery Clinic wheather would it be possbile to remove it. The Docotr answered that I would need about 8 treatments every 3-6 weeks. He assured me that there are suitable lasers in Poland to remove PWS. I'm going to go to the same surgery clinic that i was a year ago, hopefully to hear good news .

Keep Your fingers crossed.

Thare are four photos of my arm below.

1) http://img218.imageshack.us/img218/4543/18am1.jpg

2) http://img218.imageshack.us/img218/9804/28md.jpg

3) http://img218.imageshack.us/img218/6010/31dj1.jpg

4) http://img218.imageshack.us/img218/765/44ms1.jpg


With Regards.

Matthew Kostrzewski.
Reply With Quote
  #2  
Old 03-13-2006, 03:49 PM
michelle.karim michelle.karim is offline
Junior Member
 
Join Date: Nov 2005
Location: Essex, United Kingdom
Posts: 16
Default Re: Port Wine Stain on right arm.

Hello Matthew
My name is Michelle. My son, Sam, is 9 years old. He was born with an almost identical PWS to yours on his left hand and arm! It was very surprising for me to see your photos as it is very similar. Sam was seen by a plastic surgeon at Great Ormond Street Hospital for Children in London when he was four who told us that it could be helped with laser surgery. They did tell us that he would require general anaesthetic as he was very young and that he might need quite a few treatments. However, we decided not to have treatment and to wait until he was older.

Generally the PWS has not bothered Sam too much. He says it helps him remember which hand is his left one! As Now he is 9 he is more bothered by people asking about his PWS. We have just received another appointment to take him back to Great Ormond Street on 18 April to discuss starting treatment. From all that I have read it seems that treatment has to be continued and monitored for life as the PWS may come back.

I will keep you informed of Sam's progress and send some photos when we get some. I wish you good luck with your search for a good doctor.
Reply With Quote
  #3  
Old 03-13-2006, 04:24 PM
Matthew K.
 
Posts: n/a
Default Re: Port Wine Stain on right arm.


Thank You for reply, Michelle.

It's nice to know that I'm not alone with scar like this . I'm sure that treatments will help your son beacuse he's young. I heared that older persons have more problems in removing PWS. I'm still reading about PWS in the internet. I started to be interested in PWS lately, because I want to remove it as soon as possible, and I know it won't be easy.


Quote:
Generally the PWS has not bothered Sam too much. He says it helps him remember which hand is his left one!
I remember when I was 9-10. There were really good times . As far as I remember I didn't care about my scar. Nobody asked me about it, nobody pointed. Nowadays, of course nobody's pointing at me, But I'm older and everyting seems to be much more complicated. I'm going to give you a piece of advice... Try to remove it as soon as possible, because he don't take note about his scar right now. But it will change and it will become disturbing. So do your best to help him .



Michelle, have you got MSN Messenger ? I'd have some questions to you, but after your son's treatment.


I'm really looking forward to see first effects of treatments.


Regards.

Matthew.
Reply With Quote
  #4  
Old 03-14-2006, 01:06 AM
hankbartenbach hankbartenbach is offline
Senior Member
 
Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default Re: Port Wine Stain on right arm.

Hi Matthew,

First of all welcome to the group.

I am a 23 year old with facial PWS. I also have been doing laser treatment for about 18 years.

In my personal opinion about the doctor you recently talked to. I have learned over the years no doctor can prodict how long it will take to remove a PWS. Your PWS is going to be hard to remove because of the blood flow and the thickness of your birthmark. It is possible to be completely removed, but you might have to get touch up treatments every so many years until technology gets better.

Also, with PWS being on your arm you do have the risk of having KT syndrome. You might want to research it to see if you have any of the symtoms. KT runs along with Sturge Weber Syndrome (which I have) but I do not think you have that. You should research that as well because there is always that chance.

If you have any questions about laser treatment please ask I am here for you. Others on the group know a lot about laser treatment as well.
If you would like to learn more about me you can visit my website at www.hankspws.com

Talk to you soon.

Hank
Reply With Quote
  #5  
Old 04-19-2006, 01:28 PM
michelle.karim michelle.karim is offline
Junior Member
 
Join Date: Nov 2005
Location: Essex, United Kingdom
Posts: 16
Default Re: Port Wine Stain on right arm.

Took Sam to Great Ormond Street Hospital. Unfortunately, Dr Harper recommends not treating Sam until he is much older because he believes it will be too painful for him. He would need general anaesthetic for each treatment and the swelling and pain would last for up to 7 days each time. Also, the laser might leave quite a bad scar as Sam's PWS is very dense. They use three different lasers at GOSH so I think it would be a good place for you to try. Good Luck.
Reply With Quote
  #6  
Old 04-22-2006, 04:29 PM
mastonmaltese17
 
Posts: n/a
Default Re: Port Wine Stain on right arm.

Hey Matthew,
My name is Melissa and I live in North Carolina, U.S. We have an almost identical birthmark! Mine covers my right arm completely and goes onto my back and my chest. I've had laser treatments since I was three years old. Yes my birthmark is still very visible but the color is not as deep as it was when i was a baby and, in some places, my birthmark is completely gone. I remember feeling the same way you do. I wanted my birthmark gone...and fast! Other children made fun of me and called me names. It was very hard growing up with my birthmark but I became very independent. Now that I am older(17) my birthmark does not bother me anymore. It separates me from the crowd and lets everyone know that i am a unique person! I think it's like only 1 or 3 out of 3,000 babies are born with a PWS. We were pretty lucky right? I know how you feel and what you are going through...if you need to talk or would like to know about my experience with laser surgery please contact me! ;D Good Luck with your treatments!
Reply With Quote
  #7  
Old 04-22-2006, 04:45 PM
hankbartenbach hankbartenbach is offline
Senior Member
 
Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default Re: Port Wine Stain on right arm.

Hi Melissa,

I wanted to post to you and say welcome to the group.

I am a 23 year old with facial PWS with SWS (sturge weber syndrome).

I think you have a very good outlook on life from what you said in your post. Maybe you would like to share your story with everyone in our story section under individuals living with a birthmark? You can either read my story in that section or on my website www.hankspws.com

I know just how you feel by somedays just wishing the PWS would be gone or I could just be invisable. Excepting my birthmark did take time, but now I use it as an educating tool to bring out awareness of our condition.

I was wondering have any of the doctors you have seen ever mentioned the possiblity you might have KT syndrome? The reason I ask is because KT Syndrome can affect the a persons limbs that have PWS on it. I think it depends on the level of the PWS but not sure. It is something you should look at if you have or ever might have problems with your arm.

Again welcome to the group and can not wait to hear from you.

Hank
Reply With Quote
  #8  
Old 05-07-2006, 07:26 AM
Matthew K.
 
Posts: n/a
Default

Quote:
Originally Posted by mastonmaltese17
Hey Matthew,
My name is Melissa and I live in North Carolina, U.S. We have an almost identical birthmark! Mine covers my right arm completely and goes onto my back and my chest. I've had laser treatments since I was three years old. Yes my birthmark is still very visible but the color is not as deep as it was when i was a baby and, in some places, my birthmark is completely gone. I remember feeling the same way you do. I wanted my birthmark gone...and fast! Other children made fun of me and called me names. It was very hard growing up with my birthmark but I became very independent. Now that I am older(17) my birthmark does not bother me anymore. It separates me from the crowd and lets everyone know that i am a unique person! I think it's like only 1 or 3 out of 3,000 babies are born with a PWS. We were pretty lucky right? I know how you feel and what you are going through...if you need to talk or would like to know about my experience with laser surgery please contact me! ;D Good Luck with your treatments!

Hi Melissa !

Thanks for reply. Would it be possible to see your arm after treatments ? I would like to see difference before and after.

Of course, I would like to talk to you about whole treatment, give me your e-mail or nick MSN messenger.

I look forward to hearing from you.

Regards.
Matthew
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
Can a port wine stain cause physical pain? Jennyjuju Port Wine Stain Help and Resources 3 12-10-2011 01:53 AM
3 week old daughter diagnosed with Port Wine Stain elip Port Wine Stain Help and Resources 8 11-22-2006 05:06 PM
Port wine stain garcia03 Port Wine Stain Help and Resources 1 06-21-2006 03:17 PM
Lasting Laser Therapy of Port Wine Stains purplecolor Port Wine Stain Help and Resources 22 09-30-2004 07:38 AM
My Port Wine Stain Story myportwinestain Port Wine Stain Help and Resources 0 01-29-2003 01:50 AM