Saturday, September 26, 2009

More Hemangioma Information

I have gotten quite a few hits and comments lately about the post I did on WC's hemangioma and the pictures I took as it ulcerated and ultimately healed. I also posted several pictures of her H showing the scar revision surgeries we have done over the past year.

Several people have asked for advice and I want to do an overview post.

First of all, not all hemangiomas will ulcerate. Ulceration is caused by rapid growth, and as this happens, if the overlying skin is unable to handle the growth, the skin will break open and ulcerate. Also, not all ulcerations will get infected. WC's never did.

Typically, most doctors recommend a "wait and see" approach if the H is not ulcerated and does affect breathing, eating, or vision. So if you don't fit in these categories, you most likely won't need to see a specialist.

Some doctor recommendations I got:

Dr. Zide in NY
http://www.hemangioma.com/
He is a pediatric plastic surgeon. He did surgery on a baby I know of who had one above her eye because there was danger of it affecting her vision. If you email him a picture, he will give you his opinion. He is very hesitant to do surgery if it is not needed. He told us he would not do surgery on WC because it wasn't needed at the time. He said he would rather wait and do a scar adjustment surgery later.

Dr. Waner in NY
http://wehealnewyork.org/services/vascular_Birthmarks/
Dr. Waner is pretty much the pioneer in the field.

Dr. Levitin
http://www.birthmark.org/node/152
When I chatted with Dr. Levitin he was in NY with Dr. Waner but it looks like he was relocated in LA. Levitin will give his opinion via email- You may reach Dr. Levitin via email at drlevitin@gmail.com, through his website at http://www.vascularbirthmarkcenter.com/.

Dr. John Burns in Dallas - this is who we ended up using
http://www.kidsplastsurg.com/vascular.cfm
Dr. Burns is a Pediatric Plastic Surgeon who specializes in vascular abnormalities. Really, I think they are the best kinds of doctors to see for this. I don't know that they will give opinions from pictures.

Dr. Buckmiller in Arkansas
http://www.otolaryngology.uams.edu/vascular/index.asp
Dr. Buckmiller trained under Dr. Waner and gave us an opinion via email and suggested that we wait to get a better cosmetic result, since the ulceration had healed.

Here is the email address I sent the pic to to get an opinion from Dr. Buckmiller.
BussardDianeM@uams.edu Diane Bussard

Here are a few online forums that are helpful:
http://www.novanews.org/
http://www.novanews.org/NOVAPhysicians.htm list of physicians by state

http://www.birthmark.org/ Vascular Birthmark Foundation

I know I overloaded you all with links- hope some of it is helpful! If you have other questions, ask away.

So here's is what I would do if I had a baby with an ulcerated hemangioma:
Email Dr. Zide, Dr. Levitin, and Dr. Buckmiller and get opinions from them. Also try to see a doctor in your area that is on the VBF or NOVA recommended list. My experience is that it is best to see someone who specializes in vascular birthmarks- we settled on a Pediatric Plastic Surgeon that specializes in vascular birthmarks and I feel good about that.

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3 comments:

lizroberts said...

pu-leaze, girl! don't worry about it!

Tina said...

I am not in need of this type of info but I LOVE that you share your knowledge and experience. You are so kind to help out with such a difficult issue.

Thaks,
Tina

James Apperson said...

I am glad to see the info being covered.
I myself will be getting treated at the Arkansas clinic for Venous Malformations of the head and neck; probably in November.However, I won't be treated by dr Buckmiller, since she's a pediatric-specific doctor.Each of the clinics that specialize in the field of Vascular Anomalies usually have a specific doctor that treats adults.And they won't do it in the same hospital, since the clinics are usually based out of a Children's hospital.Adult cases in Arkansas are usually treated by Dr James Suen.-which is really great because ...While dr Buckmiller was trained by the famous Dr Waner ... Dr Waner was trained by Dr Suen.-which means that my doctor is (informally) the father of that field of medicine.I can hardly wait for my new lease on life.At almost 39 years of age,my biggest regret is how long it took to find out that all the doctors that told me I could never be helped... were wrong.

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