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-   Port Wine Stain Help and Resources (http://birthmark.org/board/forumdisplay.php?f=10)
-   -   Lasting Laser Therapy of Port Wine Stains (http://birthmark.org/board/showthread.php?t=174)

purplecolor 04-23-2003 05:15 PM

Lasting Laser Therapy of Port Wine Stains
 
I went to the Vascular Birthmarks Foundations website for the first time yesterday to see if I could find any information about port wine stains on extremities and why they should be treated as well as facial port wine stains.
I was horrified when I read the information posted on Port Wine Stains, and what to expect with laser therapy. The beginning of the third paragraph was just as bad. :(
Port wine stains are congenital vascular malformations of capillary-sized blood vessels. Once these are destroyed with laser therapy, they never return.
I work for a prominent pediatric physician who spends 3/4 of his time running a birthmark clinic in Colorado treating children with port wine stains and also spends time with the Sturge-Weber Foundation. I have worked with this clinic for four years now and I have never heard any of this information. After reading the article, I brought it to his attention, and he laughed stating they can put "anything" on the internet.
Laser therapy to remove a port wine stain is not temporary, and the patient does not have to have maintenance therapy for their entire life!
The pediatric physician I work for has had many, many and many more successful treatments of children with port wine stains, and has never had a patient come back for maintenance therapy. I do his scheduling and I have never had an older laser patient call for a "maintenance" appointment.
We also have docs that do laser therapy to adults with port wine stains, and I have never had one call back stating their port wine stain has returned. It may take a little longer to treat adults due to their stains being bigger and usually thicker than those on children, but once they have disappeared, they are gone for life never to return!
I have seen amazing things working here, and am grateful to be able to be a part of helping patients with such a disfiguring problem permanently! It bothers me to see such misinformation! :(

hankbartenbach 04-23-2003 06:00 PM

Re:Lasting Laser Therapy of Port Wine Stains
 
Hi purplecolor, my name is Henry Bartenbach (hank).
The doctor you are talking about his name would not happen to be Dr. Joseph Morelli? If it is, I have had laser treatment from him. He is the only doctor that I know of that has a dermatolagy and works with SWF. That might change because I am going to the International conference in July in Denver. Morelli was the first dermatolagist I saw. I was five years old, and had laser treatment from him for about five or six years. Then a dermatologist in Nebraska got a laser and then I went there until I moved to Nevada. I have been doing laser treatment now for about 14 years. Have you ever heard of a 1064um Coolglide laser? I just had a treatment this weekend and I was just wondering what your opinion on this laser is. This is my fourth laser I have used.
Could you shed some light on this subject for me?

Talk to you soon.

Hank B

purplecolor 04-23-2003 07:48 PM

Re:Lasting Laser Therapy of Port Wine Stains
 
Dear Hank,
Yes, it is the famous Dr. Joseph Morelli. And yes he remembers you very well.
As far as the 1064um Coolglide, don't know much about this laser except it has to be a Yag laser.
I had laser re-surfacing done about 6 weeks ago (for sun damage) with an Erbium/Yag and boy, did it hurt! Nothing like the pulsed dye laser! We now have a Candela laser that has a tube that blows cool air out on the surface that is being lasered and the kids like it much better!
Dr. Morelli told me to let you know he'll see you in July!

hankbartenbach 04-24-2003 02:30 AM

Re:Lasting Laser Therapy of Port Wine Stains
 
Hi purplecolor,

This is Hank, So is the pulse dye laser a V-Beam, or C-Beam? I have had both in the past and none what this coolglide has done. When I had the treatment it litterly indented my skin. When I was at Morelli's office I was useing the arcgone laser. This coolglide is my fourth laser now, and it kind of resembles the arcgone laser but did not hurt near as bad. The coolglide did not hurt as bad as either dye lasers. It was really weird because when I had the zaps there was no light and no sound. From what you have said about the yag laser I do not think it is that kind. This is a brand new machine, I had the treatment at the University of San Franscico. That dermatology has fourteen different lasers and this is just one type they have.

Yes I will be looking forward to seeing Morelli in July. I am trying to figure out how to make the reservations online but I have been having problems figureing it out.

Well I hope to talk to you soon.

Hank B

hankbartenbach 04-24-2003 03:10 AM

Re:Lasting Laser Therapy of Port Wine Stains
 
Hey Purplecolor, it is Hank again.

I just got an email from a friend that was doing some research and you where right it is a Yag laser. It is an ND: Yag laser. So what does Yag mean anyways?
It still did not hurt near as bad as the arcgone laser that I had when I first started. I do not know if it hurts more then the dye lasers because I got a local when I had the laser done. My friend told me that is new yag laser is still considered a experimental in the treatment of hemangiomas. It also has a chance of scaring, but with the H's that I have I would perfer the scaring then the H. So know that we know it is a Yag laser what can you tell me about them.

Talk to you soon.

Hank B

mamalamb 04-24-2003 08:56 PM

Re:Lasting Laser Therapy of Port Wine Stains
 
Hi Purple,

It sounds like you are speaking of Dr. Morelli.

The fact of the matter is that it is rare to have full eradication of the lesion and very false to tell patients otherwise. Many patients have deeper components of their lesion that laser simply cannot reach with current technology. If thjs doctor is saying that patients NEVER return, possibly it is b/c they move or he has convinced them it is not necessary to return. The rule of thumb at least with those I consider leading specialist dealing with pws is that you will normally see some return of color within a certain number of years with the average being 3-5 years. As soon as one sees it pink up, they should return for a maintenance treatment. There really is not absolutes when it comes to pws and its treatment because they are so individual. So many factor affect laser results such as age, skin color, size and depth of the vessels involved, laser, parameters, cooling method and the experience of the doctor.

The fact of the matter is that anything that is resistant or not the laser was not able to reach continues to progress with time. Therefore, it is the hope of those with children or have a pws that technology will improve to help with better results and find a way to either restor nerve function or fully eradicate the darn thing.

If this doctor laughed at what was written on this site, then he is very misinformed himself and should read true data from more prominent vascular anomalies specialist that are on the same SWS advisory board as he is.

My daughter has been seen by three leading specialist in the field of vascular anomalies and treated by two of them, one in Texas and the other in New York City.

Her photo is displayed on the front page of this site. As you can see, she had good results. The entire pws faded 98% after just 3 treatment, but it was all still there. There was no difference in its size.

Unfortunately just 3 months after that photo was taken her pws began to darken and we are once again having to seek treatments. That blows your peds docs theory that treatment is permanent!!! It is not in the majority of cases. It might be months, 1year, 3 years, 5 years, 10 years or more, but it will most likely begin to rear its ugly head as what remains progresses!

If he wants data, have him join the birthmarks.com email support group and he will find that his claims are very untrue. Too many folks who get little to no results and do have to go in for maintenance treatment.

Cuety 05-15-2003 11:02 PM

Re:Lasting Laser Therapy of Port Wine Stains
 
Does any of these treatments work on CVM? Capilliry Vascular malformation? I was told that there would never be any luck for me because there isn a treatment for my birthmark. I don't understand, my birthmark is close to the first layer of skin, that is why it is so purple, why would it be so hard to remove? Is it because it on my whole leg and they are to lazy to do the whole thing? geez, sometimes this is discouraging.

mamalamb 06-13-2003 04:03 AM

Re:Lasting Laser Therapy of Port Wine Stains
 
hi,

capillary vascular malformation is the medical term for port-wine stain which is the layman term.

laser treatment of the limbs is complicated and depends on the extent of the vessels involved.

Willa 08-31-2003 10:43 AM

Re:Lasting Laser Therapy of Port Wine Stains
 
Purplecolor,

I have a newborn with PWS on her cheek and neck. I am very confused after reading the entries on this site. Is treatment permanent or will my daughter have to have treament her whole life? I would love to believe what you say but the other stories are so conflicting that I don't know what to believe. Her birthmark is about the shade of pinkness on the newborn's left cheek that is shown as an example of PWS. Should we expect this to get darker or could it remain the same. The mark is many shades lighter than the one shown on the baby's right temple. Her two week check-up is coming up so we haven't discussed this with the pediatrition yet. However the doctor who delivered her confirmed it was in fact PWS. Can you help direct us?

thank you,
Willa

hankbartenbach 09-01-2003 05:29 AM

Re:Lasting Laser Therapy of Port Wine Stains
 
Hi Willa, my name is hank, I know you where asking purplecolor, but I can help.

If you go to the right side of this page and under resources click on find a physician, then find your state or one close to you and then find a dermatologist in that area. Depending on your daughters PWS will tell you how long she will have to have treatment. Everybody is different with there own form of PWS.
From what you have described with your daughters shade of PWS does sound like it will take much for the removal of the mark. Laser treatment is very safe and does not scare depending on the machine used. I have been doing treatment for fourteen years and one of the lasers I have used that does not hurt every much is the V-Beam Pulse Dye Laser. It is safe for infants and does not swell or scare. If you would like to talk more just message me back I we can talk.

Hank


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