Vascular Birthmarks Foundation Forum

Vascular Birthmarks Foundation Forum (http://birthmark.org/board/index.php)
-   Help and Resources for Hemangiomas (http://birthmark.org/board/forumdisplay.php?f=9)
-   -   plastic surgeon vs. pediatric dermatologist and experience at Sillicon Valley (http://birthmark.org/board/showthread.php?t=5979)

clarax 08-18-2012 08:24 AM

plastic surgeon vs. dermatologist for eye heman and experience at Sillicon Valley
 
Hi,

So glad I found this place following links from baby center.

3 months ago I found a nodule inside my 2-year-old daughter's left upper eye-lid. We went to two ophthalmologists. Both said it was a chalazion and asked us to wait and see. The bump grew from a pea size to a peanut size during this time and we can see tiny blood vessels at the surface.I took her to one of the ophthalmologists again and pointed out the blood vessels. Now she believes it is a hemengioma. I blame myself for not following up with doctors as frequently as I should. Did I miss the best window?

The ophthalmologists referred us to a ophthalmic plastic surgeon and told us most likely my daughter will get a shot of steroid before we consider surgical removal. I am not sure whether we should see a dermatologist too so he/she has more experience with hemangioma and can provide more treatment options. I am in particular interested in propranolol, which I have heard so many good word while many doctors don't offer it.

Can someone share some experience of seeing these two types of specialists?

Does someone have experience being treated in sillicon valley with proprannolol? Can you share the dr or clinic?

So grateful joining this community. Thanks in advance.

smurph 08-20-2012 03:50 AM

Hi! If I were you I would email your questions/concerns and a photo to Dr. Levitin (He's on the Ask the Expert site here). I was originally going to suggest you send it to Dr. Aaron Fay because he specializes in eyes but I don't see his name up here anymore???? Missy, does he not do that anymore? I would definitely see someone who specializes in hemangiomas, especially hemangiomas of the eye to double check if that is what it is, since there was a question before. (especially since they are talking about steroid shots near the eye, etc.) I wish I knew of doctor's names in that area. I'm sorry that I don't since I'm from NH, but hopefully someone from here will chime in soon! Keep us posted!
Shannon

smurph 08-20-2012 03:52 AM

Actually, I just reread your post again and noticed that your daughter is 2 years old and that you just saw the nodule 3 months ago. I'm not an expert, but there's a decent chance that it's not a hemangioma since hemangiomas usually grow shortly after birth and then start to fade or involute beginning around age 1. That's not to say that it 100% isn't but that's why I would definitely recommend you see a hemangioma specialist and get some questions answered and see if they can help you figure out exactly what it is for sure.
Shannon

clarax 08-20-2012 05:26 AM

Thank you so much for the suggestions. I just sent a question to Dr. Levitin. I also heard about Dr. Aaron Fay but didn't see his name on the list.

I am not 100% confident with the diagnosis either since my daughter was already 2 years and 5 months old when we found the tiny hard nodule under the skin. But the ophthalmologist said it now looked like a text-book deep hemangioma and could not be mistaken. I sent a picture to Dr. Levitin too. There are adult-type hemangioma too I think. But she is too young for that too. Anyway, it is a very atypical case. Now I think I really need to see a hemangioma specialist.

More comments will be appreciated. I will update and share when I find out more too.

Here is a picture of today.



And a picture 3 months ago.


clarax 08-20-2012 02:37 PM

Adding one more current photo of side view

smurph 08-21-2012 04:04 AM

Thanks for posting the pictures. I'll be curious to hear what the doctors have to say. I wish you the best of luck and hope everything goes well. :)
shannon

clarax 08-22-2012 04:54 PM

I found a thread on the board that email address from certain providers may not go through. I am so grateful that Corinne forwarded my email and I just got response from Dr. Levitin.

He recommeded an MRI with contrast before any treatment and seeing a occluplastic surgeon for biopsy or confirming the diagnosis.

Thank you all so much. This is so much quicker than response from my local ophthalmic plastic surgeon that my ophthalmologist referred us to. I don't even get an appointment yet because he is out of town for this week and his schedule is full for the coming two months.

I am going to make a donation and hope more people can be helped like us.

clarax 08-24-2012 06:19 PM

Today we got an appointment at vascular abnormalities clinic at Stanford before we could see other specialists. She is very sure this is pilomatricoma and referred us to an occuloplastic doctor for surgical removal.

We are going to see an occuloplastic doctor anyway as soon as we can get in. I will update.

smurph 08-25-2012 04:51 AM

Thank goodness for this website and that you were able to get feedback from Dr. Levitin. I wish you the very best! Keep us posted on how everything goes.
:)

Shannon


All times are GMT. The time now is 08:40 AM.

Powered by vBulletin® Version 3.6.5
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.