Why should I have lazer treatment? - Vascular Birthmarks Foundation Forum
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  #1  
Old 03-17-2004, 12:04 PM
ameski
 
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Default Why should I have lazer treatment?

I am 29years old and have a portwine birthmark that cover half my nose and the area on my right cheak from under my eye to my mouth. As I have gotten older it has definately got darker and has started growing small lumps. I had one lazered off just before my 21st birthday because it kept bleeding. My birthmark does not cause me any discomfort at all yet the treatments I have had to date have made me sick and with large painful blisters and swelling. I have to travell quite some distance for treatment. It is also very expensive and I do not have private health insurance. So why is it that everyone acts like it is just natural that I should want treatment?? :-\
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  #2  
Old 03-17-2004, 01:58 PM
Lise
 
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Default Re:Why should I have lazer treatment?

Ameski,

I'm 59-year old. I have an arterioveinous malformation of the lip. I understand how you feel. During many years, my lip kept enlarging and I was reluctant to have it treated because the procedures were risky and the results uncertain. Finally, I had a surgery last year and I'm very happy with the results.

I always hated it when people would suggest to me that I should get it treated because, like you, it was not a health problem. I felt like they were saying: "It's ugly."

I would be the first one to tell you: "Don't get it treated if you're happy like that." I've been perfectly happy most of the time with my big lip. But you're still very young and your PWS will only worsen probably -- the lumps will multiply and get larger, no?

We tend not to see our worsening condition because the process is very slow, very gradual. But the more we wait to get treated, the more difficult it is to treat. If I were you, I would put my energies and my money in treatments (of course they cause pain, swelling, etc. but it's temporary). My self confidence improved all the time through years, but I became very worried when I realized that I would be an old lady frightening kids.

Lise

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  #3  
Old 03-18-2004, 03:02 AM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 538
Default Re:Why should I have lazer treatment?

Hi Lise, and Ameski

I can shed so light on this subject as well.
I am only 21 years old but my PWS and H's cover a large area of my face and head.
I did laser treatment for almost 14 years off and on and have tried four different lasers. Allot of the PWS went away but that was not the large area that was covered. I have seen several doctors and all of them have told me that it is to risky to have my H's removed because of the risk of bleeding to death. I have a deformed internal crated artery and if I get any major cuts on the right side of my head doctors will not be able to stop the bleeding. I know both of you are older then me so you already know your marks made you a better person within. What I always tell my friends if you can not except me for who I am then I do not need you.

Talk to both of you soon.

Hank
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  #4  
Old 03-18-2004, 05:26 PM
Lise
 
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Default Re:Why should I have lazer treatment?

Hi Hank,

You and I have been talking together before . It's always very inspirational reading you. You're perfectly right: my VB -- which was there at birth but only appeared in my thirties -- has made me a better person within. Many many positive things have happened to me because of it: every day I'm amazed by that fact. People take for granted that we must want very badly to get rid of it. I've once read in this forum a parent saying he/she could not understand at all why a person would not want to have a facial VB removed. Well, not at any cost. I understand very well Ameski for example: she has no pain, no discomfort and the treatments are painful and expensive. Only, I'm very concerned when I think of the long term consequences of letting it be. That's why I would like that at least she consults now a doctor who knows about PWS and that she inquires about those consequences.

Lise
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  #5  
Old 03-18-2004, 08:10 PM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,078
Default Re:Why should I have lazer treatment?

I agree with Lise,

It is very important that you seek out as much information as possible about the consequences of not treating your PWS. Lise and I know of situations were PWS can thicken and start developing growth ontop of growth. I do know that Dr. Waner does laser under sedation (even adults). You might want to seek help from a doctor that does it under sedation (mask anethesia). You don't need to suffer. I understand the finanicial issues. The cost might be less now then if the pws got worse and treatment was absolutely necessary???????? Just a thought. Again, research the issue.

Then, you need to be comfortable with your choice...at peace with it. You sound like a strong individual that is comfortable with who you are! Super! Good luck and we will be thinking of you often.

Corinne
(son Nick with segmental H.)
__________________
Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
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  #6  
Old 04-24-2004, 01:41 PM
ameski
 
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Default Re:Why should I have lazer treatment?

Is there some terible thing that will change my life for ever if I dont have treatment on my pws ??? If so what have the doctors been keeping from me my whole life ??? I was told that it may get thicker and darker as I got older, yep true, I was told that my lip could get bigger, again true, I was also told that my birthmark may grow nodules, again yep I had the first one lazered off at 21 as it was quite large and was under my nose and every time I rubbed it (such as when I blew my nose) it would bleed, and it bleed a lot. But nothing that was actually going to kill me. So what don't I know ???
Amie :-\
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  #7  
Old 04-24-2004, 04:35 PM
Lise
 
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Default Re:Why should I have lazer treatment?

Hi Amie

It's nice to hear from you again. I understand what you are saying. But, have you ever seen pictures of PWS that have deteriorated -- pictures at, let's say, 50 years old, of PWS having begun deteriorating at your age?

Do you know www.birthmarks.com? It is a very well-informed and supportive group of PWSers. I would be curious to check their reactions to your position: it is a very interesting discussion. Thanks for sharing. I appreciate your plain honesty.

Lise
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  #8  
Old 04-29-2004, 11:26 PM
bigplayer
 
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Default Re:Why should I have lazer treatment?

My name is Trev, I am 20, I have a PWS on my right cheek, I have been treated w : : :ith V beam lazor about 10 times in the past 15 months. When I was at #8, I thought it was going very well and it seemed to be going away nicley, I noticed in the front it was still thicker then the rest, the doc said we should just treat that part, so I took her advice and did it. well it seemed to make it all more inflamed, and bring back the colour in my jaw, right upper lip, and surounding area on my cheek, WHY??, did i hit some kind of blood supply and if so will it go back to the way it was??and is it ok to drink alcohal after treatments, would that affect healing?? What are things to stear clear of when you have a PWS?? Questions!! Questions!! Questions!! :
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  #9  
Old 04-30-2004, 12:35 AM
Lise
 
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Default Re:Why should I have lazer treatment?

Hi Bigplayer,

I suggest you go to www.birthmarks.com They deal specifically with PWS.

Lise (Not a PWS)

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