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

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  #11  
Old 05-26-2004, 04:17 PM
planet
 
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Default are you sure?

Hi Corinne,

Thank you so much for replying. The closer I get to having the treatment the more nervous I am getting and wonder if it is all worth it. Are you sure that the PWS may come back? Is this 100 per cent? I have read on here that it does not come back so am now very confused. My birthmark is quite large and patchy so I hope they give me some of that cream to put on!Do you think I will be allowed to take someone in with me or is it dangerous for someone else to sit in the room with the lasers? Thanks for responding. I have learnt so much about my birthmark in a couple of days,

Kathy
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  #12  
Old 05-26-2004, 07:19 PM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
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Kathy,

If they allow someone in with you, they can wear protective eye goggles...that is all that is necessary. I do not want to discourage you from laser. Laser is a very good idea to help control the PWS. PWS can thicken with age, even become cobble stone like. Here is the statements from the VBF pamphlet (there is more than I posted, for example pws on the face...but i am posting info that pertains to your pws).

Laser therapy, which is used to remove a port wine stain, in most cases is temporary. Since the deficiency is in the nervous system, in time the blood will re-pool in the affected area and the birthmark will once again appear.

Once a Port Wine Stain is lasered, it is important at the first sign of reoccurrence to have one or two treatments to keep it faded. The individual will need to have maintenance laser treatments for life.

Because PWS can be progressive, treatment should be done early to prevent cobbling of the skin, thickening, and darkening of the stain. These lesions vary from low-grade to high-grade, pale to dark. ....

Lesions that are known as "geographic" with good skin peeking through parts of the stain, almost always respond well to laser therapy. Lesions that are more convoluted and dense will require more laser treatments.

Most experts agree that the first 7-8 treatments will achieve the max. results. After these first initial treatments, the subsequent treatments will generally produce marginal results. Following maximum results, the patient should probably take a break of one year and then try a new laser for further PWS lightening. New lasers are coming out every year that are getting deeper vessels, which are, in turn, getting more clearance.


If you would like more info on who to see for tx. Let me know
Corinne
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  #13  
Old 05-26-2004, 09:33 PM
Lisa_99 Lisa_99 is offline
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Default Re:new here


HI Planet and welcome!

I just read alot here but can share w/ you my daughters experience.

what questions can I answer for you.. ?

first answer is YES the laser can hurt..... if the settings are high enough...

Lisa W
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  #14  
Old 05-27-2004, 09:03 AM
planet
 
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Default hi lisa

thanks for your mail lisa

how old is your daughter? has she had laser treatment already?How does the Dr decide how high/strong the laser setting is?I think after seeing Corinnes very helpful mail that I have a geographic birthmark as it is patchy and pink-purple but I am not sure.The main thing I would like to know is how long i have to wait between each session and also I am quite a sun lover and have been told I have to stay out of the sun. Its summer now and thats difficult! Do I keep that area out of the sun all summer, do you think???

Corinne,

Thanks for this. Very helpful though a little disconcerting that it will probably make a comeback at some point! Any idea how long it will take to come back. Am I likely to get cobbling (wierd word! not very feminine!)on my leg if is is a geographic PWS? I am 30 and its flat as a pancake at the moment. also will i be able to come into work as normal? i am worried i wont be able to put a shoe on (as the PWS is also on my foot). I run about a bit as a library assistant and not sure how much this treatment will impede me.

Sorry for the ranting, my GP is unfortunately getting all his info from me. Doesnt have a clue!

Kathy
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  #15  
Old 05-28-2004, 12:10 AM
nickbar nickbar is offline
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Kathy,

I think you will be fine to go back to work afterwards. You will have a lot of dark pupua spots.

Yes, I have been told the you should protect the area from the sun.

Laser is usually done every 8 weeks. Some do perform is 6 weeks. It can take up to 8 weeks for the results to be final.

I have no information on how soon the pws color will reappear. I will do some searching and get back to you if I find something. I would assume its pretty spontaneous.

Good luck with this all. YOu might just be fine with the cobbling issue. Again these darn vascular birthmarks just have a mind of there own.

Corinne
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  #16  
Old 05-28-2004, 01:39 PM
planet
 
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Default Re:new here

Thanks Corinne,

I thought I might have to take a week off but hopefully i should be able to go back the next day?

Thanks for your time

Kathy
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  #17  
Old 07-08-2004, 08:44 PM
ncwh
 
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Hi

I am new here too!!! Really just started again to research my PSW. Was scared to hear about the progressive problems that can happen. Want to learn more about them

I am 43, very fit, active. My birthmark has not changed much over the years. It is still lots of soft pink clouds from top of my bum all down my right leg under my foot on top of four toes. Cosmetically I gave up trying to do anything. I was told once that mine was so big and that the back of the leg was very difficult, but that has been a decade ago. I would not do anything now to remove it except if it is true that thickening is sure to happen. Anyone who finds out any info on this, please let me know. What reasons other than cosmetic are there to do the laser.

I know all of you have led interesting lives because of your birthmark. I think (hope) it has made me a better person. I have tons of confidence and feel attractive, but shorts, short skirts and bathing suits are not in abundance in my house. Thank God for Capris in the hot Texas sun. I have always had tons of friends, boyfriends and now a great husband, twin 7 year old boys and a great life. My leg has been hurting me lately and I am trying to find a doctor. I watch my salt intake or it swells and no MSG. Also, I learned from a PWS advocate, Erin Rosas to not take hormones or birthcontrol pills as this can bring on drastic changes in color, size and pain. She found this out during pregnancy. My pregnancy I luckily had no problems.

Good luck to all. I feel a kinship with you because I have walked in your shoes. How many times have you been asked. Oh my God, What Happened to your leg??? Noel Holmes
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  #18  
Old 09-08-2004, 06:57 PM
magan
 
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Default Re:new here

hi i am new too
i am 22 and i have a pws on my face and a little on my neck. i have had laser surgery once when i was 18. it didn't hurt but it was a pain staying out of the sun because it was summer and i worked at the ymca doing summer day camp with the kids (outside alot)

i found this site a bit by accident. i have been having some trouble with small areas in the pws swelling a little and then bleeding. it is driving me crazy cause it is hard to get it to stop bleeding. it has happened before and i don't really know why. i read some of the stuff on here. is it what yal are calling cobbling. if so how do i get it to stop.

this is such an amazing site!!! i didn't even know there was a site for birthmarks. it helps you feel not quite so alone.
anyway
thanks for reading!
magan
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  #19  
Old 09-08-2004, 11:56 PM
nickbar nickbar is offline
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Join Date: Aug 2003
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Default Re:new here

Magan,

I would encourage you to seek an opinion from a vascular birthmark specialist. Let me know if you are interested and I will help locate one nearest you.

Laser might be an option to help control some of the issues you discribe. THere have been amazing advances in lasers over the last few years.

Corinne
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  #20  
Old 09-11-2004, 05:18 AM
Jin9084
 
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Default Re:new here

Magan,
Hi. I have a 3 year old son with a facal pws and sws. I was told that the laser treatments can help with the blebs. There is another site you might like it's Birthmarks.Com www.birthmarks.com It has a support group o it that is made up of parents with childern of pws and adults with pws. I have learned a lot about laser treatments and other things there.
Jinny
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