Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
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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

 




Spinal Cord Vascular Birthmarks or Lesions


The following information refers to Spinal Cord Vascular Birthmarks/Lesions. For ease in understanding, I am presenting them in two types: superficial only and compound. The Superficial ONLY lesions are a vascular birthmark (hemangioma, port wine stain, angiokeratoma, avm, etc.) that presents at the base of the spine on the skin. The Compound spinal cord vascular lesions have a stain (most of the time) on the outside of the skin and an underlying vascular lesion (these lesions are often called hemangiomas, spinal cord angiomas, angiokeratomas, avms, lymphatic malformations, lymphangiomas, cystic-hygromas, etc.) Some have no stain on the outside of the skin but do present with a lump under the skin, at the base of the spine. These lesions are very, very rare to find during life. Some anecdotal medical reports that I have read indicate that they are "common" in about 10% of autopsies, but never present as a probelm during life (so these people likely never knew they had a spinal vascular lesion). Superficial stains or birthmarks at the base of the spine with no underlying component are not the lesions that provoke concern. When there is an underlying vascular lesion, this is when you need to have an MRI or MRA to rule out any damage or impingement on the spinal cord. Stains at the base of the spine that are raised up and appear to have any bulk to them or appear to have an underlying component should be imaged as well as if the stain is flat but the individual is having problems with walking, falling, etc. The vascular lesion can wrap around the cord (called tethered cord) and cause complications such as pain, partial or complete paralysis, problems with walking, falling, etc. The birthmark is NOT what sends the patient to the doctor, it is usually the associated problems (which usually indicate an underlying vascular lesion).

There is a very rare syndrome and it is called COBB SYNDROME. Spinal cord vascular birthmarks may be indicative of this syndrome. Basically, you need to know what COBB SYNDROME is in order to diagnose it and with so few cases in the world, it is very difficult to even get it diagnosed correctly. COBB SYNROME in plain terms usually means a vascular stain at the base of the spine with an "underlying" vascular lesion - so just having a birthmark at the base of the spine does not indicate COBB, there must be an underlying vascular component that COULD or DOES impinge on the spine and could or does cause problems.

Treatment is controversial. A good Pediatric Dermatologist or a vascular birthmarks expert can diagnose COBB SYNDROME. There are various schools of thought on treatment. Interventional Radiologists use alcohol injections and report it is very successful with eliminating symptoms and surgeons report operating on the vascular lesion to remove it and any associated problems is the best treatment. If someone has a diagnosis of COBB SYNDROME the best course of action is to find (although it will be difficult) another individual who has been treated successfully for this syndrome. The internet is a good place to start as well as finding a physician who can confirm the diagnosis and present options to the family affected by the spinal cord vascular lesion. The physician may even be able to refer the family to another family who has been affected by this syndrome. Experts in spinal cord tumors (neurologists) are the most familiar with this syndrome as well as vascular birthmark/tumor experts.