Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
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1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary GalaFriday, October 10, 2014 in New York City

VBF 2014 Annual ConferenceSaturday, October 11, 2014 in New York City

Donate to VBF    Shop VBF Products
 

Ask the VBF Experts

Dr. Stuart Nelson, VBF Co-Medical Director and International Port Wine Stain Laser Specialist
Dr. Nelson will answer your questions concerning the diagnosis and treatment of Port Wine Stains.

 

Dr. Gregory Levitin, Hemangioma and Malformations Surgeon, NYC and LA
Dr. Levitin will answer your questions regarding the surgical treatment of all vascular birthmarks and tumors.

 

Dr. Robert Rosen, Vascular Lesions of Arms and Legs Interventional Radiologist
Our expert for all non-brain AVMs and vascular lesions of the arms and legs, Dr. Rosen welcomes your questions.

 

Dr. Roy Geronemus, NYC and International Laser Specialist
If you have a question or concern about laser treatments in general, contact Dr. Geronemus.

 

Dr. Aaron Fay, Hemangioma and Malformation Eye Surgeon
Dr. Fay will answer your questions about orbital birthmarks.

 

Corinne Barinaga, VBF Family Services Director
Corinne Barinaga, our Administrative Director, will answer emails concerning family advocacy, treatment questions, or physician referral.

 

Dr. Martin Mihm, VBF Co-Medical Director and Research Director
Dr. Mihm is coordinating and directing research regarding vascular birthmarks and tumors.

 

Dr. Darren Orbach, Pediatric Neurointerventionalist for AVMs and PHACE
VBF is proud to welcome Dr. Orbach!

 

Dr. Anne Comi, Sturge Weber Syndrome Specialist
One of the leading experts on Sturge Weber Syndrome, Dr. Comi will be responding to your questions concerning this syndrome.

 

Dr. Alex Berenstein, Malformations and AVM Interventional Radiologist
Ask Dr. Berenstein your questions regarding interventional radiology.

 

Dr. Kami Delfanian, KTS Treatment Specialist
Send your questions concerning KT Syndrome to Dr. Delfanian.

 

Dr. Barry Zide, NYC Hemangioma and Malformations Surgeon
If you have a question or concern about hemangioma and vascular malformation treatment in general, contact Dr. Zide.

 

Basia Joyce, VBF Insurance Appeals Specialist
Please send your questions regarding your appeal or request for out-of-network treatment to Basia.

 

Dr. Joseph Edmonds, Lymphatic Malformations Surgeon
Ask Dr. Edmonds your questions related to Lymphatic Malformations.

 

Anna Duarte, M.D., Florida Expert
Ask our expert Dr. Duarte, your questions about receiving treatment in Florida.

 

Dr. Orhan Konez, Interventional Radiologist
Questions regarding reading and interpreting films and treating malformations with sclerotherapy or embollization can be sent to Dr. Orhan Konez.

 

Dr. Milton Waner, Hemangioma and Malformations Surgeon
Email Dr. Waner with questions regarding hemangiomas and other vascular lesions.

 

Dr. Steven Fishman, Internal Lesions Surgeon
Ask Dr. Fishman your questions about liver and other internal vascular lesions.

 

Rafael Ortiz, MD, Neuro-endovascular Surgeon
Ask Dr. Ortiz your questions about vascular tumors of the head and neck region, cerebral and spinal arteriovenous malformations, treatment of craniofacial vascular lesions (venous, lymphatic, AVMs, hemangiomas) in adults and children.

 

Dr. Calil, Lymphatic Malformation Surgeon
Dr. Calil will answer your questions about Lymphatic Malformations.

 

Elissa-Uretsky Rifkin, M.Ed. CMHC Midwest Developmental Specialist
A trained developmental specialist and is on the board of VBF. Send questions concerning hemangiomas and this topic to Elissa.

 

Dr. Stavros Tombris, European Surgeon
Fr. Tombris treats all forms of hemangomas, port wine stains and malformations.

 

Dr. Stevan Thompson, Military (Tricare) Surgeon
Dr. Stevan Thompson has joined us to answer questions concerning the treatment of vascular birthmarks in the military.

 

Dr. Helen Figge, Pharmacist
If you or your child has a vascular birthmark and you have a question regarding a prescription drug, please ask Doc Helen Figge.

 

Dr. Linda Rozell-Shannon, VBF President and Founder
Dr. Linda Rozell-Shannon is the leading lay expert in the world on the subject of vascular birthmarks.

 

Lex Van der Heijden, CMTC Foundation
If you or your child has CMTC, please contact Lex with your questions.

 

Leslie Graff, East Coast Developmental Specialist
Leslie is a trained developmental specialist. Send questions concerning port wine stains and this topic to Leslie.

 

Linda Seidel - Make-up Expert
Ask Linda Seidel your questions about make-up.

 

Nancy Roberts - Make-up Specialist
Ask our expert Nancy Roberts, Co-Creator of Smart Cover Cosmetics (www.smartcover.com), your questions about make-up.

 

Eileen O'Connor, Adult Living with PWS

 

Laurie Moore, Make Up Expert from Colortration
Laurie Moore, from www.colortration.com will answer makeup related concerns.

 

Alicita, Spanish Expert
Ask our expert Alicita, your questions in Spanish.

 

Dr. Thomas Serena, Wound Care Expert

 

Sarina Patel, Young Adult Advocate

 




 

What Our Families Are Saying About Us

 

"We relied on the Vascular Birthmarks Foundation to provide us with the information, the contacts, the resources, and the support that we needed to get through this difficult time. Their theme, "We are making a difference" couldn't be more accurate. For us, it was all the difference in the world."
Jill Brown

 


Hi Linda
Just a note to say how wonderful I found the interview of you and Capital 9 news. Thanks so much for your devotion.
Gina

 




Port Wine Stains: Clearance, Cure, and Recurrence To Treat or Not to Treat


The following rebuttal by Dr. Stuart Nelson and Dr. Roy Geronemus was published in the New England Journal of Medicine in response to an article about the recurrence of Port Wine Stains (PWS) after pulsed dye laser treatment. At this year’s conference in Irvine, several physicians spoke about the pathology, progression and treatment of PWS. To summarize what was presented, after a PWS is treated using the pulsed dye laser, the vessels that are targeted by the laser will not necessarily come back, but rather new, deeper vessels will work their way up to the top of the skin thus making “some” stain appear. It is important to understand this because many people believe that PWS will always come back and, therefore, they should not have laser treatment. This is not true. While the laser does not “cure” the PWS, it offers the most hope for clearance, for keeping the skin from thickening and cobbling and for maintaining the best aesthetic outcome for the patient (comment by Linda Rozell-Shannon, President and Founder of the Vascular Birthmarks Foundation, 11/8/07).
 

Comments from Dr. Stuart Nelson and Dr. Roy Geronemus:  

"We reviewed “Redarkening of Port-Wine Stains 10 Years after Pulsed-Dye-Laser Treatment” by Huikeshoven et al (NEJM 2007;356:1235-1240) with great interest and would offer our comments. 

Unfortunately, the laser technology utilized by Huikeshoven’s group was the Candela SPTL1b, which is now considered obsolescent for port wine stain (PWS) laser therapy. This device did not utilize dynamic cooling, which allows the clinician to use safely much higher light dosages. Very likely, the light dosages in current use from lasers that are available today are a factor of more than two higher than those used in the Huikeshoven study. Moreover, other laser parameters such as wavelength, pulse duration and spot size were also “fixed” and could not be adjusted to tailor the needs of each individual patient’s lesion. PWS blood vessels are heterogeneous in terms of their sizes and depths. Consequently, the ability to vary the parameters with each treatment session and amongst different patients results in better clinical results. It is our belief that the more lesion clearing obtained, the less likely the chance of recurrence.” NOTE: This statement now has been qualified to mean that the vessels that are treated may not recur but new ones will find their way to the surface of the skin and cause “some” stain to appear like the PWS has returned. This is not true. New, deeper vessels are migrating to the surface of the skin. So, the stain appears but it is comprised of new vessels, not necessarily the ones that were treated by the laser. (Linda Rozell-Shannon, 11/8/07).  

According to Nelson and Geronemus, “Multiple devices are now available for PWS treatment, each with its own unique wavelength and pulse duration. Both parameters affect the depth and degree of heating in PWS vessels of different sizes. At our institutions, we have multiple lasers including the Gemini, four Candela pulsed dye lasers (SPTL1-b, ScleroPLUS, C-Beam and V-Beam, and Perfecta), Lumenis VersaPULSE and the Cynosure dual-wavelength Cynergy Multiplex on our permanent equipment inventories.  

Commonly, several devices are used during an extended treatment protocol in order to destroy vessels of different sizes. When therapy is first initiated, we commonly use shorter wavelengths and pulses to target the typical small (30-50 mm) diameter vessels seen in pediatric PWS. Thereafter, longer wavelengths and pulses are used to target the residual larger and deeper PWS blood vessels.  

When patients are referred to our centers after previous treatments at other institutions, we always review all previous medical records to determine which laser device was used. Changing the wavelength or pulse duration of the laser can result in substantial PWS fading not previously observed with single device therapy.
 
Two notable items from the Huikeshoven study deserve further comment. First, the average age of the patients treated ten years ago with the SPTL1b device was 13. Studies have recently shown that aggressive treatment of infants and young children at earlier ages improves PWS clearance. There are two important “optical” advantages to treating patients at as young an age as possible: 1) less cumulative ultraviolet light exposure results in less epidermal melanin which competes for the absorption of laser light; and 2) less collagen in the skin results in less light being back-scattered out of the skin. The end result of both advantages is that in younger patients more light penetrates deeper into the skin to destroy targeted PWS blood vessels. Second, it has also been documented that there can be anatomical variation in terms of the response to laser therapy. For example, the central face does not respond as completely or as quickly to laser therapy as the lateral face, and PWS located in this area are more likely to recur.  

The Huikeshoven study is helpful in educating patients and their families, as well as medical professionals, that it is possible to encounter PWS darkening after laser therapy. However, we believe that the benefits of laser therapy far outweigh the risks of no treatment. If left untreated, many port wine stains often become incompatible with normal life due to the development of bumps (vascular nodules) on the skin surface which can often bleed spontaneously with incidental trauma. Improvements in laser technology over the past decade, including the use of multiple laser devices through an extended treatment protocol and selective epidermal cooling permitting the use of higher light dosages, have expedited lesion clearing. Finally, a more aggressive approach to treating infants and young children at earlier ages has also demonstrated great promise.” (2007)  

J. Stuart Nelson, M.D., Ph.D., Irvine, CA
Roy G. Geronemus, M.D., New York, NY