Expert's Corner

 

Ask the Doctor


The Ask The Doctor service of VBF Europe is provided on a volunteer basis by physicians who work with VBF. Please use this service only if you are unable to find the information you need at our website.

Ask the Founder


VBF Announces "Ask The VBF Founder." Linda Rozell-Shannon is the leading lay expert (non doctor) in the world on the subject of vascular birthmarks.

 

Babies with Birthmarks™

Our newest program - guidelines for physicians to follow to diagnose and treat vascular birthmarks with the earliest intervention.

Recent Medical Papers and Research

New Research Out of Boston


Dynamic Cooling Paper by Dr. Nelson and Wangcun Jia


Arterio-venous Malformations Powerpoint Presentation


PWS paper by Dr. Mihm and L. Rozell-Shannon


SWS Glaucoma Facts by L. Rozell-Shannon and Dr. Fay

Test for Birthmarks

Psychosocial and Emotional Issues for Individuals with a Port Wine Stain

Simple things you can do to manage KTS (Dr. Delfanian and Linda Shannon)

Ulcer Care and Treatment (pdf)

Interview with Dr. Tombris

1.What made you get interested in birthmarks?

While in Boston for my training in Maxillofacial Surgery I had the great chance of meeting Dr. Martin Mihm, who at that time was creating the Vascular Malformation Clinic at Harvard University. He asked me if I was interested in becoming one of its members as a surgical consultant, which I gladly accepted. So we started working on vascular malformation cases on January 99, with Professor Mihm and other distinguished specialists, aiming on a multidisciplinary approach, as a tumor board, consulting on numerous cases. I was excited by the fact that these difficult cases were treated by applying common sense in the diagnostic approach and basic surgical principles in their treatment. After two and a half years of participation in this clinic I had to return back to Greece, but I was already infatuated by the experience that I gained throughout my presence there.

2.How many years experience do you have in performing surgery on birthmarks and other vascular lesions?

I started working on vascular lesions in 2001 after I got back from the States.

3.Have you worked with other experienced surgeons who have treated birthmarks or other vascular lesions? If so for how long and do you still stay in contact?

Dr. Milton Waner is my surgical mentor on this type of lesions. I met him in1999 in Boston, as he was the main surgical consultant in the Vascular Malformation Clinic. I had the chance to work with him at Arkansas Children’s Hospital in 2002, where he treated many cases referred to him from all over the world. It was a great experience to work with such a great surgeon and gain from his unique surgical skills and way of thinking. We had the chance to meet again in Pamplona,, Spain and in Niejmegen, Holland in conferences about vascular lesions. We still keep in touch and discuss cases, hoping that soon we will see each other again.

4.How many people on average do you perform surgery on weekly/monthly?

My specialty has the “advantage” of treating both elective and emergency cases. So, on average I have 2-3 major elective cases per week, plus the emergency cases that may occur. I don’t think that we should take into account many minor cases that are filing the everyday schedule. This numbers refer to maxillofacial cases in general. As to the rate of vascular malformation cases that I deal with, this varies because of the fact that I don’t work in a centre which is focused on the treatment of this type of lesions but in a Naval Hospital along with my private practice in Athens General Clinic and my office. Cases are referred to me mainly by other physicians that are aware of my interest in this type of lesions and have seen results on the patients that they had referred. Also many patients that have asked for my help were referred by other patients. For the time being I work on these cases with a team of other specialists from several medical fields that we all try to apply our experience in the treatment of haemangioma and vascular malformations. It is my goal to establish a vascular malformation clinic sometime in the near future where a team of specialists will work together, in the same setting, aiming to provide all the help we can in the treatment of these patients.

5.Even though you are based in Athens, Greece do you have any other bases that you perform surgery at, i.e. UK, and the rest of Europe?

Well, since I returned from the US, I tried to establish my self in Greece, Now I am currently practicing at Athens Naval Hospital, at Athens General Clinic and in my Private Practice which are already occupying a lot of my professional time. So up to know I didn’t have the chance of even thinking of practicing anywhere else.
Besides, the fact that I am an active duty officer at the Greek Navy, requires a full time responsibility here, and makes unrealistic any effort to practice elsewhere in regular bases.

6.If no to the question five would you consider doing a couple of set dates throughout the year in Europe and continue doing this every year if you had enough patients at each destination?

There are a lot of details that have to be set before a “yes “on this question is spelled out. Believe it or not, there are issues of surgical privileges, recognition of degrees etc. even today among different countries throughout EU. But if none of these was a fact and the professional transportation of specialists becomes easier, then yes I would be glad to offer my help anywhere.

7.How many different types of birthmarks have you seen or come across?

I think I came across to all types of birthmarks because the Vascular Malformation Clinic in Boston was a referral centre from all over the world and we had seen a great variety of many different types of malformations

8.Which in your experience is the most common type of birthmark?

The haemangioma are undoubtedly the most common types of birthmarks, especially those that present on the head and neck region.

9.Which type of birthmark do you find has best results without surgery and what are the treatment options available without having to be operated on?

I would say that small venular malformations don’t have to be operated and may be treated with the use of a pulsed dye laser with excellent results. The discussion about treatment options other than surgery depends on the type of malformation the extent and location of the lesion, the age of the patient etc. those treatment options in general include medications, sclerotherapy, embolization, laser treatment but the treating doctor has to individualize these treatment modalities accordingly.

10.On average how many times does a patient need to have corrective surgery before the final results are achieved?

Well, if we are dealing with a manageable localized lesion, then one surgery is all that is necessary. Diffuse lesions on the other hand may need to be operated several times according to their extent and location, in order to offer a delay in their growth. In cases of diffuse lesions it is not always possible to surgically remove the whole lesion, and the part that we leave behind may recur. In these cases other auxiliary treatment options may be utilized in order to control their recurrence.

11.How long is the patient usually under for when having surgery as many parents would like to know this as the patients are usually babies?

As you can imagine, surgical time is dependent on several factors including characteristics of the lesion such as size, location, type, etc but also on the surgical skills and the experience of the operating team, plus the presence of all necessary equipment. So it may vary from 45 min for a relatively small lesion in a region with no aesthetic demands and this time may increase to several hours for more complicated cases. We do not prefer to plan extended surgeries for babies, unless it is absolutely necessary.

12.In your view what are the deciding factors of needing surgery?

Correcting functional problems or aiming to avoid functional problems because of the lesion is the main factor. Also avoiding psychological squeal, developing during childhood, is the other deciding factor that we consider in favour of surgically treating a lesion that is only causing aesthetic problems.

13.What is the average waiting time for surgery?

There is no waiting list if you mean this. All cases are evaluated by the surgeon, the interventional radiologist and the laser specialist and the treatment plan is executed according to the needs of the patient. It may take some time until a lesion is ready to be operated, and this time is consumed on several diagnostic procedures or interventions in order to prepare the lesions for surgery

14.What are the estimated costs involved in a consultation with a surgeon like yourself?

Although the consultation is extensive and may require several visits it is generally charged as a single visit in a doctor’s office. The main goal of the consultation is to make the patients and /or their parents fully aware of the natural history of their condition, the treatment options, the possible risks and complications of treatment versus non treatment. It is our belief that the informed patient is the best patient that we can have.

15.What costs can you expect to encounter for surgery (minimum and maximum)?

As you can imagine there is a great variety of costs because there are so many different types of these lesions. Expenses involve the diagnostic procedures, the hospital fees, the surgical fees, the anaesthesiology fees and may vary so much that it is unrealistic to try to give an estimate in general. We try to keep all these expenses in a reasonable level as much as we can influence the total cost. There are expenses the level of which can be controlled by the surgeon, e.g. the surgical fee, and others that can’t be controlled such as the hospital fees or the diagnostic fees. The main goal though is to try and solve the patient’s problem and many times that is all we care for.

16.What is the usual recovery period after surgery would age and health be a factor?

The recovery period can range from several hours after the procedure to one week, according to the extend of the surgical intervention. Health is always a factor as in all surgical procedures and the medical history of each patient is always considered. The age of the patient is sometimes a factor, for example we avoid surgical procedures in newborns, before they reach the 10th week of life, before they reach 10 pounds of weight and before they reach a certain haemoglobin level.

17.If corrective surgery is required what is the time period in which patients need to wait?

Again it depends on the specific problem that we are facing. For example if we partially remove a lymphatic malformation or a diffuse venous malformation, we are going to operate again when the lesion is evident again and causes some type of aesthetic or functional problems. There is no way to estimate this period of time as many lesions behave differently and do not follow the same growth pattern. For extended haemangioma one may have to operate again after evaluating the behaviour of the remaining lesion, the involution rate, the aesthetic demands the age of the patient etc.

Parent's
Corner



Information for Parents

DOA Logo
Don't Forget!
Every Day is a Day of Awareness for VBF!
Visit the VBF International Day of Awareness Website:
birthmark.org/awareness


Good Search

What if the VBF earned a penny every time you searched the Internet? Now it can! GoodSearch.com is a new Yahoo-powered search engine, with a unique social mission... every time you use GoodSearch, money is generated to support the mission of VBF. Just go to www.goodsearch.com and be sure to enter the Vascular Birthmarks Foundation as the charity you want to support. The more people who use this site, the more money we'll earn so please spread the word! Go to http://www.goodsearch.com

If you think your child has a hemangioma Click Here...
hemangioma
If you think you or your child has a port wine stain Click Here...
Before and after of port wine stain
If you think you or your child has a venous malformation Click Here...
Before and after of venous malformation

Good Search

What if the VBF earned a penny every time you searched the Internet? Now it can! GoodSearch.com is a new Yahoo-powered search engine, with a unique social mission... every time you use GoodSearch, money is generated to support the mission of VBF. Just go to www.goodsearch.com and be sure to enter the Vascular Birthmarks Foundation as the charity you want to support. The more people who use this site, the more money we'll earn so please spread the word! Go to http://www.goodsearch.com

2003 Port Wine Stain Conference Videos and 2005 PWS Conference Audio CDs Available

2003 PWS Conference....4-PART VIDEO SET...now discounted from $69.99 to just $29.99 PLUS $5.00 SHIPPING AND HANDLING This is an important addition to your medical library and is appropriate for both physicians and those interested in learning more about vascular birthmarks. Learn from the convenience and comfort of your home or office. This set contains lectures from world-renowned medical experts in the field of Vascular Birthmarks. Please click here to place your order. (pdf order form) There are only a few sets remaining. Hurry while supplies last.

2005 PWS Conference...3 CD Audio Series...is available for a donation of $49.99. of which $30.00 is fully tax deductible. Listen to the incredible presentations by world experts in the field of PWS, Sturge-Weber-Syndrome and Klippel-Trenaunay Syndrome as they discuss the latest research and treatment information. This presentation is the most current information you will find on this subject. There is a limited supply. This set will be sent to you by UPS within two weeks. To buy this set, click here. (pdf order form)

Chapters of the VBF

VBF
VBF Europe
VBF Spain
VBF Peru
VBF Latin American
VBF New Zealand
VBF Australia
VBF India
VBF Africa
VBF Asia
VBF Poland
VBF Philippines
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Sturge-Weber Syndrome Community
SWSC-Canada

Partners

Anomalie Vasculaire Site for French speakers worldwide, and friend of VBF that offers support and information about vascular birthmarks


Publications for Parents:

  • VBF Vascular Birthmarks Brochure - Download and Print - A comprehensive brochure describing all vascular birthmark types, syndromes and treatment options. To print, click here (you will need the Acrobat Reader to view and print this document).
  • Doctor Visit Survey Have you been seen by a doctor to assess a vascular birthmark? Please click here and complete our survey. This survey will be used to provide feedback to the doctors about the information and treatment they provide to families affected by a vascular birthmark. Complete your survey and mail to Corinne Barinaga, VBF Director of Information Services, 17309 NE 29th St., Vancourver, WA 98682.
  • Before you visit, email, or speak to a birthmark specialist, be sure to read our Checklist for Parents!
  • Port Wine Stain Leaflet (pdf) (Word)
  • Hemangioma Leaflet (pdf) (Word)
  • Psychosocial and Emotional Issues for Individuals with a Port Wine Stain
  • Simple things you can do to manage KTS (Dr. Delfanian and Linda Shannon)

You will need Adobe's Acrobat Reader to open and print the pdf documents. If you do not already have it installed, you can find it here.

You will need Microsoft's Word to open and print the Word Documents.

Parents' Stories

Read our Interview with Dr. Tombris!

Do you have any suggestions to improve the services we offer to our VBF families? Send us your comments and suggestions!