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  #1  
Old 06-11-2006, 08:05 AM
smurfy
 
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Default Questions that might be answered.

Hello,

I am not used to posting about my birthmark, its kind of a tough subject with me. But I'm 27 years old and have a PWS that covers about 1/2 of my face total. It covers my left ear totaly, and it runs down across my face from there to my mouth which it covers totaly also and then a little bit to the right side of my face. I've never talked to anyone else that has a birthmark like mine so i'm kind of needing some answers if there are any out there. I'm not sure what the technical terms are for everything are so i apologize for it in advance. My PWS is one that is continualy growing i mean by my face is always getting larger where the PWS is, including my ear which is about one and a half times larger than the other. Please dont take this as a scare or anything as what can happen with a PWS, and all apologize if it might sound like i'm whining about it.

Where my PWS covers my ear it also enters my ear and covers the inside completly, including the ear drum. I have problems hearing out of this ear because of it. Its severly painful to try and clean my ears myself, i have to have someone else do it for me because i cant put myself in that much pain without wanting to pass out.

I have also the Bumps i call them, but i remeber when i was younger the doctor called them large collections of vessels that grew out of the skin. But basicly to me they are a Big Red Mole. I have about 5 of them, 2 are about 1/4 inch wide, and about the same tall that stand off my face (makes it hard to shave). I have about another 10 or so that are starting to grow. I know that they can be removed but last time i had one removed it took the doctor 4 tries to remove it, it kept growing back biger and would bleed easier. So i havent had them removed again because of the problems last time removing them. Any Advice on what i can do about them?

Now for the real pain to me (besides the constant stares and teasing). I cannot go out into the sunlight for very long, or out into hot weather for long either. I get very sick from heat very quickly, and sunlight just makes it hurt after about 10 min or so of being out in it. If anyone else has this problem and has found something that can help let me know please. I live in South Texas so its not something I can escape from.

I did the Tuneable Dye Laser for about 6 years. It barely lightned the color, and the recovery was not worth change that i got. Maybe it works on other people but i dont think it worked well on me.

I've had alot of problems with my PWS over the years and alot of them have mainly been my fear of it. Its caused me more pain and suffering than I'd wish on my worst enemy. But yes i see its made me a better person for having to deal with it all the time and deal with people that have nothing better to do than make fun of the Guy with a Red/Purple Face. And I've heard them all and some of them are acctualy funny. At the moment I am thinking about trying to get Social Security Disablity. I've barely had a few jobs in my life and most of them were only because i knew managers and were friends with them. Too many people look at what you look like when you try to get a job. And i'm just not able to do very much job wise because of my PWS.

Thank you, if you have anything you can help me with please let me know.
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  #2  
Old 06-11-2006, 11:56 AM
KristieinStMarysGA KristieinStMarysGA is offline
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Join Date: Feb 2005
Location: St Marys GA
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I am sure Hank will see this and reply. I don't have a PWS so I am not sure what I could do to help. I do know that Hank will be able to offer a great deal of advice and support!

Kristie
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  #3  
Old 06-11-2006, 03:36 PM
Liesbeth
 
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Hi Smurfy,

I'm so glad you posted to this website! I'm a mother of a daughter with a leg PWS but you will find people through this site who are in a situation much more similar to yours. The first thing I thought when I read your post was: you need to see different doctors! But maybe you've already seen lots and don't want to do that. I can't wait for Hank to connect with you - it sounds like you have a lot in common.
It seems like you're often in a lot of pain - that must be really hard. I admire your attitude and taking the step you made to come here and communicate with others!!
Good Luck!

Liesbeth
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  #4  
Old 06-11-2006, 07:09 PM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 538
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Hi Smurfy,

First of all welcome to the group.

As the others have already said I am in the same boat as you. I am 24 years old with facial PWS. If you would like to read my story you can do so at my website hankspws.com Also, I think it would benifet you to go to Geoff Ritchie's website which is www.geoffspws.com

Ok, just for clairafacation on a few things that you said. When the PWS grows, thickens (which I have) it is called hypertrophia (not sure the spelling). The little bumps which you have discribed are called blebs, which can grow into coblestones (which Geoff had before getting them removed).

Being that I live in Nebraska where there is a lot of humitity and I know what TX is like what you are experienceing when you are outside also happens to me. I am convenced that it is the humitiy mostly that causes my sickness being outside for to long. Sun exposure on the other had is not good for any person with PWS or vascular birthmark. Not sure if it makes it worse, but it diffently makes laser treatments less effective.

The blebs will only get worse as you can see on Geoffs website. I strongly suggest doing one of these things. One, go to the resource section at the top of this page and find a new physician that is in TX there is many. Second, if you emial me hank@hank@hankspws.com I can forward your email to a friend if mine that lives in TX with PWS which is also the founder of www.birthmarks.com. Michael still contiues to get laser treatment and could refer you to a doctor or even his own doctor in TX. PS birthmarks.com has several other adults with PWS on their support group and is like the extended part of the PWS group on this website. Finally, the last thing you can do if you are interested in getting plastic surgery or debulking (the our term of removal of PWS) right now or when you can get an appointment contact Dr. Waner in NYC (contact info in the resource section) and schedual a clinic appointment with him. Geoff and I both have seen Dr. Waner for debulking surgeries. Geoff has had eight and I have had three with him. You can see pictures of his work on our websites. He is expensive, but well worth the results. If he can not treat you nobody in the USA can or will even try. He was the only doctor even willing to touch Geoff and I.


If you would like to talk more you can email me directly. I can not remember if there were any other questions in your message I have vision problems so I can not read for very long times. If there was anything else re ask it on here or email it to me or if you have any additional questions do the same.

Talk to you soon.

Hank
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  #5  
Old 06-11-2006, 07:46 PM
smurfy
 
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Thank you all for your replys, I would have never guessed or dreamed that there are this many people with simular problems as I do. Thank You Hank for your reply. My biggest problem is that I cannot afford to see any doctors about my birthmark. That is my biggest problem i just can afford the treatments that are needed to help with my problems. When i was getting the Laser Treatments done I was part of the CIDC (Criticly Ill and Disabled Children) program. It paid for everything for my treatments I know they are extreamly expensive but I'm poor unfortantly. So if anyone knows of ways i can get help with the payment and everything I would greatly appreciate it.

Thank you.
Scott
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  #6  
Old 06-13-2006, 04:24 PM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,078
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Scott,

I have received a few requests over the past three years from TV producers looking for patients to do a story on and often in turn they pay for treatment. I will keep you in mind if I receive this request again.

Also, I would encourage you to contact ask the experts (send your medical info and picture)... for example dr. Nelson about your pws. Many of the specialists have funding available to cover treatment for those that do not have insurance and can't afford treatment. It is worth asking about, you never know if you qualify.

I believe Dr. Waner used the YAG on some of Geoff's cobbles and he had great response.

HUGS
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