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-   -   Are Port Wine Stains Ever "Cured"? (http://birthmark.org/board/showthread.php?t=1467)

PresidentVBF 06-30-2005 12:13 AM

Are Port Wine Stains Ever "Cured"?
 
First, remember that we are learning new things every day about port wine stains.

Port wine stains come in various grades and those grades relate to the depth of the vessels. Grade I are shallow and respond well to laser therapy and Grade III have deep vessel involvement and don't respond as well. With the more shallow stains you can see good skin peeking through and these are called "geographic" port wine stains. These stains respond very, very well to laser therapy and people often report a complete "clearance" of these stains. There is actually a stain that is a little less than a Grade I which has resolved completely with laser therapy and after many years the individuals report that it has not come back. This is about as close we can get to a cure. Since lasers have not been around long enough, or at least the good lasers, we don't know if they are truly "cured" although some docs use that word. Stains that are deeper, like the Grade II and III have a mix of geometric and confluent stains. The confluent are solid...solid...solid and are Grade III. You will get lightening and these will even "break up" the stain and give you some fleshy spots, but the stain will be there after 10 treatments because the laser can only penetrate 1mm and can't reach the thicker, deeper vessels. So, you see stain because it is there, way down below the 1mm level. The Grade II lesions that are a mix will have some pretty good resolution and a little make up will make them almost disappear but these come back in time as the the Grade III and some of the Grade I lesions. Only a small number of people with very, very superficial port wine stains (very shallow vessels) report to recurrence. So, can we call them cured? Some say yes. Some say that in time when the women hit menopause and the men are in their 40s and 50s they will come back but only time will tell. When we have a good 20 years of information we will know what is and what is not cured. Also, the cause is in the nervous system and it makes the vessels constrict and dialate so it would not make sense that a laser could "cure" the deficiency in the nervous system, although it could make the "stain" appear to NOT BE THERE. What I am saying is that it is there, but way down deep.

Linda Rozell-Shannon
VBF President/Founder

Thankful 06-30-2005 03:12 PM

Re: Are Port Wine Stains Ever "Cured"?
 
I am getting the idea that my daughter will always have to keep up treatment. She is 5 yrs old,has a PWS on her cheek & has been getting treatments every 8wks since she was 2 months old. Do you think she could cut back on treatments,not every eight wks?

PresidentVBF 07-05-2005 11:59 PM

Re: Are Port Wine Stains Ever "Cured"?
 
Your daughter should have reached "peeked" clearance by now and should be able to go on a "one treatment" a year program. If there is still stain it is because it is deeper than the laser can reach (current laser you are having her treated with). Those vessels won't be reached until a new laser is invented or a new procedure developed to reach them. We are hoping to hear about this at our conference in California in October.

Linda Shannon
VBF President/Founder
hvbf@aol.com

worried mom 07-20-2005 12:36 AM

Re: Are Port Wine Stains Ever "Cured"?
 
My daughter is 5 months old and has a PWS on her left calf. It is currently about 6 cm long, but grew from 4 cm at birth. Her pediatrician says not to worry, but I do. Should I take her to another doctor? If so, who?

Thank you,
worried mom

Quote:

Originally Posted by PresidentVBF
First, remember that we are learning new things every day about port wine stains.

Port wine stains come in various grades and those grades relate to the depth of the vessels.* Grade I are shallow and respond well to laser therapy and Grade III have deep vessel involvement and don't respond as well. With the more shallow stains you can see good skin peeking through and these are called "geographic" port wine stains.* These stains respond very, very well to laser therapy and people often report a complete "clearance" of these stains. There is actually a stain that is a little less than a Grade I which has resolved completely with laser therapy and after many years the individuals report that it has not come back. This is about as close we can get to a cure. Since lasers have not been around long enough, or at least the good lasers, we don't know if they are truly "cured" although some docs use that word. Stains that are deeper, like the Grade II and III have a mix of geometric and confluent stains.* The confluent are solid...solid...solid and are Grade III. You will get lightening and these will even "break up" the stain and give you some fleshy spots, but the stain will be there after 10 treatments because the laser can only penetrate 1mm and can't reach the thicker, deeper vessels. So, you see stain because it is there, way down below the 1mm level.* The Grade II lesions that are a mix will have some pretty good resolution and a little make up will make them almost disappear but these come back in time as the the Grade III and some of the Grade I lesions.* Only a small number of people with very, very superficial port wine stains (very shallow vessels) report to recurrence. So, can we call them cured? Some say yes. Some say that in time when the women hit menopause and the men are in their 40s and 50s they will come back but only time will tell. When we have a good 20 years of information we will know what is and what is not cured.* Also, the cause is in the nervous system and it makes the vessels constrict and dialate so it would not make sense that a laser could "cure" the deficiency in the nervous system, although it could make the "stain" appear to NOT BE THERE.* What I am saying is that it is there, but way down deep.

Linda Rozell-Shannon
VBF President/Founder


hankbartenbach 07-20-2005 01:54 AM

Re: Are Port Wine Stains Ever "Cured"?
 
Hi Worried Mom,

Have you checked the resources at the top of the page. If you can not find one in your state or one close to you. Let us know and someone on the group might know of someone.

Hank

maisiesmum 01-07-2007 08:47 PM

Hello Hank
 
:mad: :mad: :mad: :mad:

Hello Hank, I have been trailing this site for the last 8 months but have never posted but have decided to do so now. Your posts have been my inspiration through a horrific journey.

My prescious baby Maisie was born with an extensive port wine stain covering her right arm, hand, chest and back. We have had so many different diagnosis, but finally got a fantastic hospital and a diagnosis. They beleive Maisie may or may not have Klippel Treanuay Syndromme, they say time will tell, if she has it its only the mild form hank, it just means her arm may grow longer and or fatter. She also had displaced thumbs and im waiting to see a hand surgeon about that.

Hank, me and my partner are in bits, she is due to have her first laser in 4 weeks we have been told that it probably wont work, as its so extensive, other things are she may have to wear a compression stocking on her arm, and she can never go on the pill due to the clotting factors (NOT THAT ANY MAN WILL BE GOING NEAR MY DAUGHTER) ha ha ha!!!

HAnk, I find so so so hard, are the stares, the comments, and in the summer people were asking me had she been sunburnt. I have tried everything in my power to not let it get to me,but im such a sensitive person, that i feel every stare like Im being stabbed in the heart. Hank Im so ashamed to say this but I just had a nervous breakdown, due to all the worry and stress. I cant help being upset. I keep blameing myself, did I do something wrong, did I eat something wrong!!!! My familly are not understanding at all , all they say is well shes not going to die, and its not on her face...... so what I say, its still disfiguring!!!!!!!!!!!!!! I never want my daughter to hurt.

The plan of action is they will do 3 test laser treatments on her if it works sje will have every 3 months for 3 years which will tackle it all the once, and then see how it goes.......................... I HATE IT. I need to accept it i know, have you always been so accepting of it, or does it take time.

I value all your opinions on here Hank and would love to hear from you, and congratulations on your engagement!!!!

Tracy x

4mason 01-07-2007 09:56 PM

hi tracy- i know that this posting was directed to hank, but i hope it's alright if i chime in-- as i was reading what you wrote, i'm almost in tears! i am the mom of a 2 year old little boy with extensive PWS, and i have all the same thoughts as you- i just can't accept it the way everyone seems to think i should. i try, i really do. i keep going through my mind of every single instance that happened while pregnant... i ate right, took vitamins, wasn't around smoke/caffeine... still, it happened. i know that it was just supposed to be this way, but it is SOOOO hard to watch your precious baby go through what you would gladly take in their place!!! it still kills me everyday... and i worry all the time about his future, will he be happy/feel accepted... anyway, i have never heard anyone who sounds more like me, and i just wanted to say that if you were near me i would offer you a big hug... if you ever need to vent, or want to chat about something, i would be glad to talk with you. i have always wanted someone to talk with who has actually been there, for some reason, it helps me to know that we are not alone with this! mandi

hankbartenbach 01-08-2007 02:30 AM

Hi Tracy,

It took me a long time to except my birthmark. I always had a positive attuide torwards it. One of the biggest things was that may parents never treated me different. I must emphasize that if your daughter can sense your emotions torwards her birthmark she will never except it herself. If you teach her that she is no different then any of the other children (your own if you have any also). You have to make the questions into a positive. I turn it into educating children. That it does not hurt and it is ok to except people for their differences. The more positive feedback you give her the easier it will be for her to except her PWS.

For the laser treatment if the laser treatment does not make drastic improvements in the first three treatments do not give up. It will take more then just three before you will see any change at all to tell you the true. I have been doing it for 19 years now and as you can see on my website my birthmark is not going anywhere anytime soon. The extent of your daughters PWS, until technology gets better they only thing you can do is keep it from getting worse. If removing her PWS does not work maintanceing is a must so it does not grow.

I hope this has help you. If you have not seen my website you can check it out at www.hankpws.com

Hope to talk to you soon and good luck at the doctors office.

Hank

michelle.karim 01-08-2007 07:23 AM

Reply to Maisiesmum
 
Hope you don't mind my contacting you but read your message and wanted to let you know that you are not alone.
I can fully appreciate the comments you have received about sunburn etc. My son Sam is 10 and has a PWS on his left hand and arm. Often in summer we are asked whether Sam has burnt his hand - he has even had the odd child in school say they don't want to sit next to him. Children are stronger than we know and I'm sure if you give your child love, warmth and a feeling of self worth then the PWS will only be a part of them and not define them. Sam is very confident, happy and not at all embarrassed by his PWS; he says it helps him remember which one is his left hand! When asked by children, he explains what it is and that it doesn't hurt ,as most often this is what they are worried about.
Please feel free to contact me if you would like to chat more.
Good luck! Michelle.x


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