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

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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.

 

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 Stain


PWS

 

Port wine stain (PWS), also called nevus flammeus, is a congenital, cutaneous vascular malformation involving post-capillary venules which produce a light pink to red to dark-red- violet discoloration of human skin. PWS occurs in an estimated 3 children per 1,000 live births, affecting males and females and all racial groups equally. There appears to be no hereditary predilection for PWS within families. There are no known risk factors or ways to prevent PWS.

 

Since most of the malformations occur on the face, PWS is a clinically significant problem in the great majority of patients. PWS should not be considered a cosmetic problem but a disease with potentially devastating psychological and physical complications. Detailed studies have documented lower self-esteem and problems with interpersonal relations in PWS patients.

 

port wine stain, after treatmentThe cause and origin of PWS remains incompletely understood. It is believed that PWS develop within the first 2-8 weeks of gestation. The most likely hypothesis for the development of PWS is the deficiency or absence of surrounding neurons regulating blood flow through the ectatic post-capillary venules. As a result, the blood vessels are unable to constrict normally and remain permanently dilated.

 

PWS is a progressive vascular malformation of the skin. PWS remain throughout life; there is no involution. PWS are well demarcated and flat and grow proportionately in surface area with the child. In infants and young children, PWS are flat red macules. However, the lesions tend to darken progressively to purple and, by adult age, often become raised as a result of the development of vascular papules or nodules. These changes in color and contour are attributed to progressive ectasia of the abnormal dermal vascular plexus. Over time, blood vessels become more dilated and susceptible to spontaneous bleeding or hemorrhage following minor trauma. Bleeding can be difficult to control, necessitate hospitalization and may also increase the likelihood of skin infection. If left untreated, PWS often become incompatible with normal life due to the development of vascular nodules on the skin surface which can often bleed spontaneously with incidental trauma.

 

The hypertrophy (increased tissue mass) of the underlying soft tissue that occurs in approximately two-thirds of lesions further disfigures the facial features of many patients. For all of the above reasons, most medical specialists agree that it is essential to begin treatment of PWS as early as possible and to maintain treatment in order to prevent the development of vascular nodules and hypertrophy in later years.

 

The pulsed dye laser in conjunction with cryogen spray cooling (“dynamic cooling device” or “DCD”) is now the treatment of choice for PWS. Yellow light produced by the pulsed dye laser penetrates up to 2 mm into the skin and is preferentially absorbed by hemoglobin within the dilated PWS blood vessels. The heat within the vessel lumen causes blood vessel damage which is evidenced by intense purpura (“bruised” appearance of the skin). Several treatment sessions spaced at 4-8 week intervals are required for maximum efficacy. The number of treatments required for maximum PWS fading can be variable and unpredictable. Treatment side effects are mainly limited to post-operative swelling and purpura, which generally resolves within 2 weeks. With the addition of cryogen spray cooling, the risks of scarring or changes in the normal skin pigmentation are minimal after pulsed dye laser therapy performed by an experienced physician.

 

Multiple pulsed dye laser devices are now available for PWS treatment, each with its own unique wavelength and pulse duration. Changing the wavelength or pulse duration of the laser can result in substantial PWS fading not previously observed with single device therapy. Moreover, several devices are sometimes used during an extended treatment protocol in order to destroy vessels of different sizes.

 

Studies have recently shown that aggressive treatment of infants and young children at earlier ages improves PWS clearance. There are several “optical” advantages to treating patients at as young an age as possible: 1) less epidermal melanin which competes for the absorption of laser light; 2) less collagen in the skin results in less light being back-scattered out of the skin; and 3) thinner dermis and lower fractional blood volume in younger patients allows more light to penetrate into the skin to destroy targeted PWS blood vessels.

 

It has become clear that treatment of a PWS early will prevent the development of the hypertrophic component of the lesion. Postoperative biopsies after laser treatment of a PWS reveal that the existing blood vessels are smaller and fewer in number compared with pretreatment biopsies. Thus, the opportunity for progression of these lesions to a more ectatic state is less likely to occur. Although the majority of PWS lesions do not recur, some lesional redarkening many years later has been reported after successful PDL therapy. One possible explanation might be continuous dilatation of the remaining ectatic vessels which also lack autonomic innervation. Patients who do experience some redarkening will usually only require one or two treatments to return to their former level of PWS blanching.

 

J. Stuart Nelson, M.D., Ph.D.
VBF Co-Medical Director
Medical Director, Beckman Laser Institute and Medical Clinic
University of California, Irvine

 

Investigation into optimal treatment intervals of facial port-wine stains using the pulsed dye laser

 

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

Comments from Dr. Stuart Nelson and Dr. Roy Geronemus

 

If you need additional resources or support with port wine stain related problems, please try posting in our Discussion Forum.

 

The VBF Birthmark Fact Booklet is here (pdf)

 

Need a medical opinion? Ask the Expert!

 

MAKE UP FOR BIRTHMARK COVERING

Nancy Roberts of www.smartcover.com will send anyone who wants to cover a birthmark a gift certificate. Write directly to our Ask the Make-up Expert on our experts corner and receive a free gift certificate for $15.00 towards the purchase of any Smart Cover make up product.

 

How to Appeal an Insurance Denial or
Request Out-of-Network Treatment
(pdf)