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  #1  
Old 03-20-2007, 02:19 PM
vlaffredo
 
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Default Treatment of PWS

I have a PWS on the back of my right thigh. I started having trouble with it bulging out several years ago and it got to where it causes discomfort to sit. I had several laser treatments done and it seemed to shrink and fade. But now it is bigger than ever and a vein leading from it has become more prominent and has 'spidered'. It has been recommended that I have more laser treatments and see a vascular doctor about the vein. Does anyone know if there is a 'permanent' solution to removing the PWS, I do not want to go through more treatments the rest of my life?
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  #2  
Old 03-23-2007, 02:06 PM
Janny
 
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Default hi

Hi, vlaffredo
I'm Janny from China. I've read some threads here, and found that the treatment mentioned is laser. I'm going through a treatment cold "photodynamic therapy(PDT)", it can also be used in cancer treatment. For me, it does works, and i've download a lot of research papers about PDT used for PWS, they say once the red color faded, it won't appear again(after ten or more than ten years). there are laser treatment and other kinds of treatment, too, but it is said PDT is the best.

Hope this helps and i wonder if anyone knows something about PDT.

Janny
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  #3  
Old 03-23-2007, 05:28 PM
wantego
 
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Originally Posted by Janny View Post
Hi, vlaffredo
I'm Janny from China. I've read some threads here, and found that the treatment mentioned is laser. I'm going through a treatment cold "photodynamic therapy(PDT)", it can also be used in cancer treatment. For me, it does works, and i've download a lot of research papers about PDT used for PWS, they say once the red color faded, it won't appear again(after ten or more than ten years). there are laser treatment and other kinds of treatment, too, but it is said PDT is the best.

Hope this helps and i wonder if anyone knows something about PDT.

Janny
Janny how many pdt treatments have you had? On what part of your body? How much success have you had? I see some studies going back to 1991 but I'm surprised I havent heard more about PDT
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  #4  
Old 03-24-2007, 02:02 PM
Janny
 
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Smile

i've had three times PDT treatment. i have red birth marks on my left side of face, from eyelid to forhead to hair, and a little under nose(more than 100cm x cm). Doctor divided it into four parts, two parts for one treatment. So some places have been treated twice and some just once. The color is dark purple/red before treatment, now they are light red. Before i took my first treatment, my doc estimated that may be it will take 6 times for each part to cure(it's an average number). I hope i can just take four or less. Hope i'm lucky enough. The efficacy varies with different people. (It's a little hard for me to spell out a sentance, i'll write more later. )
And PDT was used for PWS in China since 1991, according to a research paper.

Janny
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  #5  
Old 03-24-2007, 04:21 PM
wantego
 
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Quote:
Originally Posted by Janny View Post
i've had three times PDT treatment. i have red birth marks on my left side of face, from eyelid to forhead to hair, and a little under nose(more than 100cm x cm). Doctor divided it into four parts, two parts for one treatment. So some places have been treated twice and some just once. The color is dark purple/red before treatment, now they are light red. Before i took my first treatment, my doc estimated that may be it will take 6 times for each part to cure(it's an average number). I hope i can just take four or less. Hope i'm lucky enough. The efficacy varies with different people. (It's a little hard for me to spell out a sentance, i'll write more later. )
And PDT was used for PWS in China since 1991, according to a research paper.

Janny
Janny your pws sounds similar to mine. With the laser they usually say 6-12 treatements but it is rare for total clearing. It sometimes happens but its often more fading than total clearing with the lasers. I hope PDT will be better. Mine is very light. Maybe as light as anyones but I still see it.
Janny with the PDT do they inject the PWS with any kind of solution before treatment?
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  #6  
Old 03-25-2007, 04:03 AM
Janny
 
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Originally Posted by wantego View Post
Janny your pws sounds similar to mine. With the laser they usually say 6-12 treatements but it is rare for total clearing. It sometimes happens but its often more fading than total clearing with the lasers. I hope PDT will be better. Mine is very light. Maybe as light as anyones but I still see it.
Janny with the PDT do they inject the PWS with any kind of solution before treatment?
Yes, they inject my arm/hand with some medicine through inravenous injection, but not the PWS. After the injection, I must cover myself up from strong lights. Then they illuminate the PWS(it's the only place of the body that is uncovered) with laser. After the treatment i have to keep away from strong lights for about a month or so. there are another kind of medicine that allow you less days(7-10days) covering from strong light, bu more expensive.

I saw some patients in the hospital, their PWS almost tatolly gone.
To have PDT, your color of skin will get darker, for the use of the medicine. But doc say it's restorable. And the treatment is really painful.

Janny
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  #7  
Old 03-25-2007, 06:27 PM
wantego
 
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Originally Posted by Janny View Post
Yes, they inject my arm/hand with some medicine through inravenous injection, but not the PWS. After the injection, I must cover myself up from strong lights. Then they illuminate the PWS(it's the only place of the body that is uncovered) with laser. After the treatment i have to keep away from strong lights for about a month or so. there are another kind of medicine that allow you less days(7-10days) covering from strong light, bu more expensive.

I saw some patients in the hospital, their PWS almost tatolly gone.
To have PDT, your color of skin will get darker, for the use of the medicine. But doc say it's restorable. And the treatment is really painful.

Janny
Thats interesting. I wonder why PDT isnt used here.
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