New member-hemangioma or vascular abnormality?

[Halimom]

Hi everyone,
My daughter Nadia is 21 months old. She has three birthmarks.
A strawberry one on her right arm that was visible at birth and is almost gone.
A 'lumpy' strawberry mole behind her ear that has stopped growing at about 1/2 an inch (1 cm).
The third a hemangioma?: At about five weeks we noticed this bruising on her left cheek, which has been diagnosed as a cavernous hemangioma. It has since grown to be about 2 to 2.5 inches big. (The size depends on the day.) It seems to have stopped growing at about 18 months?, but shows no sign of involution yet. It is bluish and veigny. Please see attached photo. Some days the veigns are more visible than others.

I read somewhere that doctors can misdiagnose hemangiomas. That if the bump changes size when blood flows to the brain (crying or being hot), it could mean that it is actually a vascular abnormality. I noticed that Nadia's bump does do that. If she's crying or in the summer some days it would seem bigger than general for no apparent reason.

How would I be able to tell the difference? Can anyone tell from the photos if it is definitely a hemangioma?

I have seen an ear nose and throat specialist at our local kid's hospital twice. Both appointments lasted about five minutes! I have another appointment coming up and want to be better prepared with lots of questions. The 'specialist's' approach has been one of wait and see, or more like just let it do it's own thing. I don't think he is actually a hemangioma specialist...

I also read somewhere that if it starts to grey, this means that it has stopped growing and the involution is about to begin. If it greys fast, that means rapid shrinkage (age 3-5). If it greys slowly, this means it could still be present age 5-10. Does anyone know more about this?

I would appreciate any feedback!

Thanks,
Judy

[missy]

An hemangioma IS a vascular abnormality. That is why it will change color or size depending on other factors... the heat, if she is crying, etc. That happens in both hemangioma and venous malformations (also port wine stains). And so that is not the way to tell the difference.

Where are you located. You need to see a specialist that has more experience than the one you are currently seeing.

Missy

[Halimom]

Thanks for your reply Missy,

I am in Halifax, Nova Scotia, Canada.
The department of Otolaryngology is located at the locla IWK children's hospital.

Judy

[nickbar]

Hello, Judy.

It would be best to have an opinion from a specialist. I would encourage you to email Dr. Levitin from ask the expert list with the history and photos. Most likely this is a hemangioma and diagnosis would be based on history and if necessary biopsy and/or mri/imaging.

Deep hemagniomas are often stubborn and involution can be slow. I would encourage you to seek advice from specialists with extensive experience treating hemagniomas.

Please feel free to email directly if you need any help

[Rachel06]

Hi, Judy. First off, I wanted to say, she is so cute!!! Wish we all had that bright-eyed look... Second, I just wanted to offer out support. From your post, it seems like you have been searching for help and not finding it. You will get much support here and gret information too. My daughter was treated by Dr. Waner in New York - Corinne mentioned e-mailing Dr. Levitin for an opinion - I am more than happy to help you with that connection if you are interested in hearing what they have to say.

I wish you the very best and if I can be of help at all, please feel free to e-mail me at sherrirfoster@sbcglobal.net.

Sherri

[Halimom]

Thanks for your reply everyone.
I had another appointment at the Hospital's ENT clinic.
This time a pediatric surgeon took a look as well.
They both agreed that the hemangioma was shrinking a bit slower than expected. (We can't even tell if it is shrinking).
The surgeon suggested we wait until she is five years old and then see if we want to persue surgery or that hopefully the bump would be significantly reduced so that she'd only need laser therapy to deal with the veins.
he said that if he operates he would have to go on the outside of her face, because the hemangioma is so close to the skin and that it would leave a scar.
I told them that I would like a second opinion and they were open to give a referral. I was thinking of contacting either sick kids hospital in Toronto or Dr Jose Dubois in montreal. She is listed on this site as a hemangioma specialist and has over 20 years experience. I just have to figure out how I can get it covered by my medical.
If it is going to leave a very visible scar. I wonder if the surgeon's suggestion make sense?

[nickbar]

I replied to your email.
Corinne