Do you really living with PWS? - Page 2 - Vascular Birthmarks Foundation Forum
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  #11  
Old 03-12-2005, 03:05 AM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default Re: Do you really living with PWS?

Hi Beth,

Welcome to the site.

Thank you for posting how you live with PWS.
I have seen Dr. Waner. He I hope you get in, he is a very busy man. It takes a long time for me to get in.

Thanks again, and I hope to hear moreabout your story.

Hank
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  #12  
Old 03-13-2005, 07:37 PM
bethhahn
 
Posts: n/a
Default Re: Do you really living with PWS?

Thanks, Hank! I've been reading about your experience and sugery, as well as all the good things you've got to say about Dr. Waner. Apparently, he's right across the park! I never knew until I came to this site. Thanks so much!

I'll check back to keep up with new developements.

This is a great resource.

Best,
Beth

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  #13  
Old 03-15-2005, 03:51 AM
NJmommy
 
Posts: n/a
Default Re: Do you really living with PWS?

Hi,
I am new to this board.
I am 25,female,and have a port wine stain that covers my right cheek, around my eye,and most of my nose.
I have NOT been out in public without makeup in 12 years.

I went threw 5 years of pulse dye laser (very little results)
2 years of Photo Drem laser ( same results,easier heeling)
I only do laser now when it gets dark purple,or if I get another growth .

I'm happy to hear that there are other women out there that live a normal life without makeup.( Men don't really have the option)
I unfortunately am not one,I was practicly tortured as a child, and do not feel the need to go threw that anymore if I don't have to.

I have lost the option of having any more children,because my doctor feels that I have a high risk of an anurysm during pregnancy or delivery .Since my vessles grew so much during my last one.

I truly applaud all of you that brave the world without a mask,because you are much braver than I .

If anyone has received treatment that has signifigantly helped,please keep me informed.
I'd appreciate any info.
Thanks


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  #14  
Old 04-24-2005, 07:06 AM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default Re: Do you really living with PWS?

Hi Nymommy,

Do you have a picture of yourself with out makeup that you could send me?

I am interested because laser treatment only works to a point, but you might have other options. Does your PWS puff out at all or hyperplaged? The reason I ask is plastic surgery like what I am having might reduce the area in size and then take then laser treatment it with a PDL to remove the PWS. It will not ever be away for life but it might work for several years.

How long ago did you use the PDL? I have used three different ones in the 17 years from when I started and the new PDL's are allot better then the older ones, and work three times as fast, cover more are, and does not hurt or brouse near as much as the older ones.

All kids with a vascular birthmark went thru the torturing stages of life. I still get teased, pointed at, stared at on a daily bases. Just have to learn to let it roll off your shoulders and not let it get to you. I have warn make up, but not very often even though I am a guy. The biggest point I am making is, if a person can not except you for owe you are with out make up then you do not need that person in your life, and you are better off just agnoring them.

Let me know if you want more info on the surgery.

Hank
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  #15  
Old 05-03-2005, 06:03 AM
Toowtie
 
Posts: n/a
Default Re: Do you really living with PWS?

Hello-

I have come to this site quite by accident and I am very glad that I stumbled upon it. Lets see where should I start, I am 24 years old (just turned!), and I have PWS on my right arm, hand, breast, and back.

My entire life from as young as I can remember it has been a source of constant grief in my life. My parents did their best to give me confidence despite my birthmark and always reminded me that, "you are not your body". Although, this seems concievable, in our self-obsessed and vain culture I have found it difficult to accept that statement.* I remember countless summer days of wearing long sleeved shirts and many tears before getting into a bathing suit and especially the night before prom.

The worst part was that when I tried to explain my difficulties to anyone they just would simply say that it was no big deal or that I should be happy I was born with limbs. Of course it doesn't matter to them, they love me regardless, they don't have to wake up every morning and see such a visible flaw that cannot be easily disguised.*

The other tradgedy is that not only do I have to live PWS, I also have the desire to be a performer on stage. I am a singer studying Opera and it is my dream to sing professionally. But, I am very reluctant to pursue this because of my PWS.* Luckily, I have been in productions where I don't have to show lots of skin, but what happens when the director calls for it, what then? Of course, I have tried to cover it wiith makeup but it is still somewhat visible under the stage lights.* Living with PWS has made me feel that maybe I don't belong on stage and that to me is sad because it is the one place where my reality is allowed to melt away and I can pretend to be out of my own skin, if only for a short moment.
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  #16  
Old 05-03-2005, 06:21 AM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default Re: Do you really living with PWS?

Hi Toowtie,

I know how you feel 22 with PWS on face.

You are really lucky really. You can at least cover your PWS. For a guy it is really hard to where makeup on my face. It just does not look right.

You can not let your PWS get in the way of living your life and dreams. I get comments, staring, laughing, and pointing on a daily basis. Does not even phase me. Sometimes people say so you can not do it you are disabled. That just fuels me to try harder. Now I have a college degree.

So what if people see your PWS, let them if they want to they are the only one making a fool out of themselves. The way I see it is if people can not except you for who you are you do not need them, and you do not need the negitivity in your life. Live life to the fullest weather it is getting up on stage in a tea shirt, or a Tank top. Do not let your PWS hold you back. Let the comments go in one ear and right out the other, or just let it roll off your shoulders.

Just be yourself on stage and the PWS will just melt away. LOL

If you ever want to talk one on one email me anytime. My email is in my profile.

God put aware PWS on us for a reason otherwise it would not have happened.

I will talk to you soon, and hope you see the light and not let the PWS hold you back.

Hank
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  #17  
Old 05-27-2005, 08:08 AM
Ruth
 
Posts: n/a
Default Re: Do you really living with PWS?

I am 36 and have a port wine stain which covers the best part of my left lower leg and continues up my leg in large patches. I have not seen a specialist since I was in my early teens when my parents were exploring options to remove it. My leg is bigger and longer than the other leg and I have had two operations at age 12 & 13 to remove grpwth plates in my knee to reduce the rate of growth and therefore the length of my leg. The operations were resonably successful in that the difference in leg length is within aceptable amouts now as it was 2 inches and threatening to be greater. When the surgeons cut through my birthmark in one incision they apparently were very surprised at the bleeding and aparently said they has some difficulty stoping it.

I was wondering if anyone else had experienced any difficulty in surgery where there is an extensive port wine stain involved?
Incidently I have always ignored the fact that I have a birthmark in that I made a decision that I was not going to be self concious of it. It was hard but I feel much stronger for it and now I hardly think about it come summer and its back into short and short skirts bikinis etc!!
Hope someone can help me with my query.
Ruth
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  #18  
Old 05-27-2005, 05:18 PM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default Re: Do you really living with PWS?

Hello Ruth,

Welcome to the group.

I am 23 with facial PWS/SWS

Where ever PWS is you will always have a very high risk of bleeding, because of the extra blood in the capullaries.
I have had several surgeries, but only one directly connected to my PWS and that was plastic surgery from Dr. Waner in NYC.

No other doctor would even touch it because my high risk from PWS and my deformed cradoid artery. They always side because of my artery that if I ever got any major cuts on the right side of my face that I would bleed to death and doctors would not be able to stop it. I lost 4 table spoons of blood when I had surgery with Dr. Waner.

I hope this helps,

Hank
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  #19  
Old 07-22-2005, 06:25 PM
keferah
 
Posts: n/a
Default Re: Do you really living with PWS?

Hello everyone,

* * *I'm a 23 year old woman.* I began my laser treatments in November of 2004.* I have been going to get a treatment about every month and a half due to my work load and schedule.* Today, I will get my 6th and 'final' treatment.* According to my physician's analysis and consultation at the beginning of my treatment this will be all that's required for the removal of my port wine stain on the left side of my face and on my head.* I payed $5,000 + $25 for each tube of numbing cream + $? for the cream used after the treatment.
* * *
* * *I'm a bit anxious because I don't know if I will need more treatments.* I trusted the doctor's plan but now I'm scared he will try to get more money from me.* I am not happy with the doctor I picked.* If I will require additional treatment I plan on going somewhere else.* I remember when I first walked in the doctor's office with makeup on, the women who worked in his office looked at me like I was rich, vain and what I wanted to do was unnecessary.* But, when they saw my birthmark before and after the treatment they couldn't or wouldn't even look at me.* I was so satisfied that their 1st assumption of me was proven wrong.* They really need to hire more sensitive individuals to work in these offices.* Or maybe they shouldn't see patients like us along with women who come in for their wrinkles.
* * *
* * *I'm just thankful to God for this "late miracle".* I used to pray as a child before I went to bed that I would wake up the next day and my birthmark wouldn't be there anymore.* After about 15 years of this frequently asked request God has made a way and provided the money for this "miracle".
* * *
* * *I feel strange now that my birthmark is dissappearing.* I feel like I will require psychotheraphy.* My life has been so affected by having this birthmark.* Unfortunetly, I received insults from strangers and even family member's looks of disgust and cruel comments.

* * *I understand the struggles you all are going through.* May God provide you with strength and everything else you will need in this life.
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  #20  
Old 07-22-2005, 08:26 PM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default Re: Do you really living with PWS?

Hello Keferah,

First of all welcome to the group.

I am 23 with facial PWS/SWS.

I know exactly what you are talking about stares, pointing, laughing, and the comments. It really does hurt sometimes. I have learned to let them roll off my shoulders. Sometimes I use it as fuel to prove the people wrong when they say I can not do that because of my condition.

About your doctor. Depending on what level your PWS (Port Wine Stain) is you will have to keep having touch up laser treatment. They have not come up with technology yet to make it permently removed. If your PWS is really light you do have a chance to have it removed for a long period of time. In my case, I have been doing laser treatment for 18 years and now doing plastic surgery to remove the thickness of my PWS. See my website for pictures.

What state do you live in?

Under the resources at the top of this page you might be able to find a doctor in your area. If not someone on this site might know of someone that is not on the list.

What numbing cream are you using?
If you would like to know about a new cream out there email me or go to my website where there is a link to it.

I hope this helps you and I will talk to you later.

Hank
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