PWS/Venous Malformation treatments - Vascular Birthmarks Foundation Forum
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  #1  
Old 12-09-2005, 09:44 PM
Jonellen
 
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Default PWS/Venous Malformation treatments

I have a PWS on my chin and up the left side of my cheek to my ear. The PWS also affects my lower lip. I've recently started pulsed dye laser treatments on my face and am seeing a difference. The left half of my lower lip is more swollen than the other side. It is noticeable and I'm very self conscious about it. I have an ultrasound scheduled this month to see the extent of the blood vessels. The doctor seems to think my lip portion is a venous malformation. He said one of my options is that he can put me under general anesthesia and insert a laser into my lip and laser the malformation from the inside to stop some of the blood flow. I will have to go back once every 8 weeks to continue treatment. He said this will stop my lip from continuing to gradually grow and also reduce the size of it. Once we are no longer getting results from the laser, then if my lip is still bigger than I like, I can have a lip reduction. Has anyone else had or heard of this type of treatment?

Thanks for any information
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  #2  
Old 01-04-2006, 06:43 PM
Jonellen
 
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Default Re: PWS/Venous Malformation treatments

Really?!?! No one has any encouraging words or anything to say? :'(

It looks like I'll have my first treatment where they insert the laser into my lip the first week in February. I hope it works. I'm nervous and excited!
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  #3  
Old 01-04-2006, 09:13 PM
QCBirthmark
 
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Default Re: PWS/Venous Malformation treatments

I must apologize sugar I honestly didn't see the post. I sincerely wish you the best of luck. I haven't heard anything about a lip reduction but that might be bc of my daughters PWS and the placement of it...(not on her lip). I am sure someone on this forum has an answer for you.

Let us know how it goes sugar!
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  #4  
Old 01-05-2006, 01:01 AM
nickbar nickbar is offline
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Default Re: PWS/Venous Malformation treatments

YOur treatment plan sound very familiar with other cases of pws on the lip. Keep up the laser tx. and keep us posted on how they are going. Lip debulking is an option if you want to take care of that.

HUGS

Corinne
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  #5  
Old 01-05-2006, 07:04 PM
Jonellen
 
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Default Re: PWS/Venous Malformation treatments

Thanks for the replies. I feel better. Yes, they are going to do the laser treatments first from within my lip and then once we aren't getting results from that anymore, they will debulk the rest. The drs seem to think the laser will help reduce my lip some but we will definitely need to debulk after the laser treatments. I'll let everyone know how it goes.
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  #6  
Old 01-05-2006, 11:05 PM
hankbartenbach hankbartenbach is offline
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Default Re: PWS/Venous Malformation treatments

Hi Jonellen,

I am sorry I did not even see this topic on the group. I do not know how I missed. Thanks for reposting it.

I am 23 with facial PWS.

When you say inserting a laser into the VM are you meaning with the regular PDL or a different kind of laser?
The reason I ask is because of the way you worded it. If it is different I would suggest do some more research on it. If you could get the name of the laser they would use (if different)The doctors office could tell you for sure if you do not know.

Also, where are you located? Someone on this group might have seen your current doctor or someone in that area and they might be able to share on this subject.

The area that is swollen that your doctor thinks is a VM could you discribe it a little more?
Is it the same color or darker. PWS can grow (in my case). Does it have little bumps on it?
It could be the start of bleps or cobleing.
I am not a doctor so this is just my opinion. You could sent a picture to the PWS expert on the front of this website. If you are interested in see how my PWS grew you can see it on my website www.hankspws.com
You can also see what it looks like now after I have had three plastic surgeries on the areas that grew. Dr. Waner in NYC did a very good job removing my excess tissue from my PWS.

Hope this helps, and good luck with the ultra sound.

Hank

I
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  #7  
Old 01-06-2006, 03:36 PM
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swsc swsc is offline
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Default Re: PWS/Venous Malformation treatments

Jonellen:

My grandson has SWS/PWS and his lower lip has become quite large. During his last laser treatment, the doctor "zapped" it with the laser (VBeam). While there was a slight improvement, it didn't take long for the lip to return to it's previous condition. The plastic surgeon mentioned that there was a doctor who was doing research on fiber-optic lasering of the lip - where a fiber-optic laser tip is inserted into the lip. (However the doctor doing the research died, and our doctor didn't have any information on the success rate for this treatment). Is this what your doctor is proposing? I'm very interested in hearing more about this, and the results. Please feel free to contact me at any time swsc @ insightbb.com (no spaces).

All the best,
Glenda
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  #8  
Old 01-16-2006, 04:50 AM
Jonellen
 
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Default Re: PWS/Venous Malformation treatments

The doctor said they will be using a YAG laser for the portion they will insert into my lip.
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  #9  
Old 01-18-2006, 02:45 PM
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swsc swsc is offline
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Default Re: PWS/Venous Malformation treatments

Jonellen - Thanks, and please let me know how things turn out. Any information you can provide will be most appreciated.

Glenda
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  #10  
Old 01-19-2006, 10:08 PM
Jonellen
 
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Default Re: PWS/Venous Malformation treatments

I have to call on Monday to make my appointment for sometime the beginning of February. I'm nervous but feel confident everything will go well. I'll let you all know how it goes once the procedure is over. Keep me in your prayers if you are the praying kind. Thanks
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