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-   -   Looking for info or Support about a VB for yourself or a Youth or older? (http://birthmark.org/board/showthread.php?t=1280)

hankbartenbach 03-16-2005 04:43 AM

Looking for info or Support about a VB for yourself or a Youth or older?
 
Hi everybody,

If you are A person at any age with a Vacular Birthmark, or a parent with a Youth or older and looking for support or information, you are in the right place.

If you are looking or a doctor in your area on the front page under resources click on Find a physicain, then go to your state. After you find a doctor and want to learn more about the doctor post a topic asking other people or parents of someone that has a VB and you can learn first hand of the doctor's background.

If you are looking for support or want to compare stories we are always here for you and your family for any questions or concerns you might have.

I am only 22 years old, but I have been thru grade school and college. I know how people react to the apprenence to Vascular Birthmarks. The pointing and staring. I can relate growing up with PWS on my face, and going thru 14 years of laser treatment.

If you have any questions at all we are here to help.

Hank

PA Dad 04-11-2005 11:22 PM

Re: Looking for info or Support about a VB for yourself or a Youth or older?
 
Hi.

My son has a PWS on his left eye.* He is 15.

We did laser treatments for two years about ten years ago, down at Children's Hospital in Philadelphia.* There was some lightening, but it didn't last.* We finally got to the point where they told us that they had done all they could do.* *We have not attempted any treatments since.* I always wondered if there was anything else we could do.* We live in the Bethlehem, PA area.

Is there anyone in our area that is experienced in this kind of treatment?* I see only three doctors listed for PA.* If anyone has any experience with any of these, (or NJ), please let me know.* *Our insurance will probably not cover any treatments, so it's very important that we deal with somebody who will not just take our money to perform some fruitless therapy.

How much have laser treatments progressed in the last ten years?* Is it true that they are all only temporary?* How often must they be repeated?

What preventative measures can we take regarding glaucoma?* He had an eye exam today, and the doctor noticed some irregularity in the nerves (although his eyes are fine right now).

Thank you for your support, and for just having this forum.

J. Boyd




eprmo 04-11-2005 11:47 PM

Re: Looking for info or Support about a VB for yourself or a Youth or older?
 
My daughter is also 15 years old, and vascular birthmark research has changed GREATLY since our kids were born. If you email me directly, I can give you names of excellent doctors in your area. Also, it is very important for your child to be closely watched by a opthomologist.

Elissa
psyelectro!aol.com

hankbartenbach 04-12-2005 01:11 AM

Re: Looking for info or Support about a VB for yourself or a Youth or older?
 
Hi J. Boyd,

Elissa is right technology has greatly improved in the ten years you have not had any laser treatment.

I am 22 with PWS/SWS (Port Wine Stain birthmark/Sturge Weber Syndrome).

Has your son been ruled out for SWS? Conditions thar are related are seizures, glaucoma, and PWS on the brain.
I only have the PWS on the brain, even though I have PWS in my eyes as well. I just a very high risk of getting glaucoma.

At your son's age he should be checked for glaucoma every 6 to 12 months depending on the what the opthomologist thinks. If his pressure was below normal that is good, and every 12 months would be fine. High pressure is one sign of glaucoma and should be check every 6 months.

I started laser treatment 17 years ago about 14 years off and on. The V-Beam Pulse Dye Laser is the newest laser out there and it is very effective in most cases, and is three times as fast as the laser used 10 years ago in Nebraska. I do not even need a numbing for the V-Beam I get it straight. They would put a shield under his eyelid to do the treatment.

Yes you are correct laser treatment can remove the PWS but will have to have touch up treatments every 10 to 15 years. Technology is not good enough to remove it permently.

When it comes to insurance you have to make sure they do not consider it cosmetic surgery. What insurance do you have? If you find a doctor that particpates with your insurance it will cover allot of it. I have Blue Cross Bue Shields and they have covered me for all my treatments and surgeries.

I hope this helps,

Hank




Amys Mom 12-07-2005 03:40 AM

Re: Looking for info or Support about a VB for yourself or a Youth or older?
 
I am 37, when my mother went through the experience with me (ulcerating large hemangioma covering my entire back and around to abdominal area) the recommended course of treatment was "wait and see" or radon chip implants.........RADON!!! You guessed it - Radon = CANCER. Thankfully my mother made the right choice and I am left with a scar. Take advantage of modern technology...........


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