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  #1  
Old 04-02-2006, 03:29 PM
mommy23
 
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Default PWS questions about scheduled treatment

Hi All,

I am a 35yo woman with a PWS on the right side of my right leg/foot. I last had it treated with a Candela laser around 1991/2. At that time I went four times (they did a section at a time) for one overall treatment. I noticed minimal lightening of the BM and you can see "dots" where the laser was pulsed.

I recently scheduled an appt with a local DR (there are no NH docs on your resuource list). They use the Lumeris laser. Anyone familiar with it? They don't seem to have any before/after pics for me to look at. Are there other treatment options I should inquire about? Anyone had any luck getting their insurance company to cover treatment? WHEW~ Sorry to pepper you all with questions. Here are some pics.

<img src="http://i51.photobucket.com/albums/f3...mbini/bm3.jpg" border="0" alt="Image hosting by Photobucket"></a>

<img src="http://i51.photobucket.com/albums/f3...mbini/bm2.jpg" border="0" alt="Image hosting by Photobucket"></a>

<img src="http://i51.photobucket.com/albums/f3...ambini/bm.jpg" border="0" alt="Image hosting by Photobucket"></a>

Thanks in advance!
* *
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  #2  
Old 04-02-2006, 03:33 PM
mommy23
 
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Default Re: PWS questions about scheduled treatment

Sorry, the laser they use is the LUMENIS ONE (intense pulsed light).
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  #3  
Old 04-02-2006, 05:31 PM
Liesbeth
 
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Default Re: PWS questions about scheduled treatment

Hi mommy23,

Your PWS looks very similar to the one my 2-year old daughter has. She has been treated twice with pulsed dye laser but no lightening has occurred. Other people on this board will know a lot more about the different types of treatment. What I know (and you may know already) is the difficulty with a PWS on the leg: chances for fading with laser are much slighter than if the PWS were on e.g., the face. However, I don't know if it is any different with Lumina. I've seen a few fairly recent studies that claim to get good results with intense pulsed light for the treatment of portwine stains that are resistant to pulsed dye laser. But again, examples of the leg are very rare (I haven't found any so far). I am sure that other people will stress as well how important it is to find a good specialist! Make sure he knows what he is doing, and he knows about leg PWSs specifically, before you go ahead with the treatment!

Liesbeth

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  #4  
Old 04-03-2006, 01:54 PM
juliemn juliemn is offline
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Posts: 95
Default Re: PWS questions about scheduled treatment

I have to admit that I haven't kept up on any of the latest treatment options for PWS. We have been lucky enough to find a dermatologist that specializes in this, and we know he'll keep up with any new treatment options. My son is treated with pulsed dye, and does have a small birthmark on his hand in addition to his facial birthmark. They've zapped the hand a couple of times, but it hasn't seemed to do anything. His face responds fairly well to one of the pulsed dye lasers.

From everything that I DO know, I'm fairly certain that the pulsed dye laser rather than the pulsed light laser is still the standard for PWS treatment. But, as I said, I haven't kept up with technology and things seem to change rapidly in the medical field.

I have to agree with Liesbeth when it comes to finding the right doctor. One that treats this on a regular basis will give you the best answers. Being on the east coast does give you several options, though they may be out of state. Many people here can give you an opinion on several dermatologists in the NE that specialize in vascular birthmark treatment.

You could also post this question to one of the specialists on the home page. They would be able to tell you if this laser has shown to be effective for PWS treatment.

HTH
Julie
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Julie H
Mom to Ben (multiple AVM's, PWS, SWS)
www.MeetBen.com
jshiggie@gmail.com
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  #5  
Old 04-03-2006, 07:20 PM
mommy23
 
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Default Re: PWS questions about scheduled treatment

Thank you for the replies. You have pointed me in the right direction. It doesn't seem like that laser effectively treats PWS. I cancelled my appointment & will look into going to Boston to see a specialist.
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  #6  
Old 04-03-2006, 08:35 PM
juliemn juliemn is offline
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Default Re: PWS questions about scheduled treatment

It's a jungle out there...LOL. Weeding through information can be frustrating when it comes to this. The birthmarks.com site has a page dedicated to all the technical aspects of laser treatment if you're interested.

Good Luck, and if you have any questions, feel free to ask.

Julie
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Julie H
Mom to Ben (multiple AVM's, PWS, SWS)
www.MeetBen.com
jshiggie@gmail.com
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  #7  
Old 04-04-2006, 02:06 PM
mommy23
 
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Default Re: PWS questions about scheduled treatment

It IS a jungle. It's frustrating when centers try to make you feel like their laser might work in order to get a new patient, instead of being honest about the limitations. I have a family and already feel guilty pursuing the procedure...I can't afford to waste my money on ineffective treatments on top of it! Where is the "pulling my hair out icon"?
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  #8  
Old 04-04-2006, 05:19 PM
juliemn juliemn is offline
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Default Re: PWS questions about scheduled treatment

Many insurance companies cover this, though some take a bit more work than others. A doctor that treats PWS on a regular basis should be able to help you with your insurance request.

Julie
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Julie H
Mom to Ben (multiple AVM's, PWS, SWS)
www.MeetBen.com
jshiggie@gmail.com
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  #9  
Old 04-05-2006, 02:24 PM
Liesbeth
 
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Default Re: PWS questions about scheduled treatment

Good luck! Don't give up!!! We got coverage for our daughter's treatments. On two treatments, we paid around $400 out of pocket. Succesful treatment will be better for your leg physically. You are entitled to want a leg that looks normal, too.

Liesbeth
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