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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.

 

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.

 

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

 




Glaucoma and Sturge Weber Syndrome Some Facts You Should Know


By Linda Rozell-Shannon, MS, President and Founder of the Vascular Birthmarks Foundation (www.birthmark.org). Medical Editing by Dr. Aaron Fay of the Mass. Eye and Ear and VBF’s leading eye specialist.

The purpose of this article is to provide some plain-language facts for individuals affected by glaucoma, which is the most serious eye problem of Sturge Weber Syndrome (SWS). Note: SWS is a condition that involves 3 components: vascular malformation or stain of the eye, skin, and the central nervous system. You can have eye problems, even glaucoma, and not have SWS.

· Glaucoma is the most common serious eye problem of SWS, with a reported incidence of 30-70%. It is defined as an increase in intraocular pressure which causes pathological changes in the optic disk and typical defects in the field of vision.

· The reason for this increased eye pressure (glaucoma) may be the result of either the outflow obstruction by a vascular malformation of the front area of the eye, the choroid or elevated venous pressure associated with an episcleral vascular malformation/stain.

· Eye problems for individuals with Sturge-Weber Syndrome and/or a Port Wine Stain but NO Sturge Weber Syndrome is usually a result of a vascular malformation or stain of the conjunctiva (delicate area that lines eyelids), episclera (white eyeball tissue), retina (an inner lining or membrane of the eyeball) and choroid, (area that furnishes blood to the retina). These are conditions that affect the eye itself. There can also be eyelid enlargement from a vascular stain, called tissue hypertrophy. This hypertrophy may or may not affect the function of the eye. Tissue hypertrophy can cause a significant astigmatism and visual impairment. So, there are two types of eye problems, those that affect the function and health of the eye, and those that affect the tissue around that eye (and may or may not result in functional problems for the eye).

· Most eye physicians (ophthalmologists) and vascular birthmark experts agree that an eye problem can occur if there is a vascular stain on the eyelids.

· A condition where the involved eye can have a darker colored iris (Heterochromia) may occur in Sturge-Weber Syndrome individuals.

· Various experts’ report that nearly 50% of all infants diagnosed with a port wine stain on the eyelid will be at risk for glaucoma. Involvement of the upper eyelid has the highest association with SWS.

· Glaucoma associated with SWS usually affects only one eye, but in rare cases can affect both eyes.

· Individuals with upper and/or lower eyelid involvement but no glaucoma are still at risk for late-onset glaucoma. It can occur in late childhood or adulthood.

· 60% of the glaucoma in SWS cases is diagnosed in early infancy (when the eye is susceptible to the stretching effects of increased intraocular pressure---glaucoma). These infants can have enlarged corneal diameters and myopia (actual eye enlargement called Buphthalmos). For the other 40%, glaucoma begins later in childhood or early adulthood. When it is late onset, there is usually no eye enlargement.

· Most doctors agree that the management of glaucoma associated with SWS is difficult. Lifelong anti-glaucoma drugs with a potential for systemic side effects are frequently needed and often multiple surgical procedures are needed.

· Infants and young children with glaucoma who present with corneal clouding, which is due to the high pressure from the increase in blood flow, seldom respond adequately to the antiglaucoma medications over a long period of time. Thus, for this age group, medication is usually combined with surgery. Older patients can usually be managed with medication alone.

· Treatment of SWS should always involve an ophthalmologic physician who is a glaucoma expert and is familiar with this syndrome. Eye exams should be conducted under anesthesia and performed at least every six months.

· The management of glaucoma in SWS relies on a combination of drug therapy and surgery. The lifelong use of multiple types of antiglaucoma medications and repeated surgical procedures is the norm. The drug industry is continually improving antiglaucoma medications, with fewer systemic side effects. Additionally, new surgical approaches to improve the success of filtration surgery; along with the development of surgical procedures to lower episcleral venous pressure will greatly improve the management of complications associated with eye problems and SWS.

REFERENCES:

Cheng, Kenneth P., MD “Ophthalmologic Manifestations of Sturge-Weber Syndrome”
From Sturge-Weber Syndrome, edited by John B. Bodensteiner, MD. 1999. (Sturge Weber Syndrome Foundation).

Bodensteiner, John B., MD “Sturge-Weber Syndrome” From Facial Plastic Surgery Clinis of North America. Volume 9, Number 4, November 2001, as edited by Dr. Marcelo Hochman.

Mulliken, John B., MD and Young, Anthonly E., MD. Vascular Birthmarks: Hemangiomas and Malformations. WB Saunders Company. 1988.

April 2005