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  #1  
Old 02-19-2014, 09:57 AM
sarahboyce35 sarahboyce35 is offline
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Default eye hemangioma-help please

Hi my son is nearly five months old and has a deep tissue hemangioma above his right eye/eyebrow area. It makes his eye look swollen and the lid droop a little. I have had to fight to get this diagnosed and am now finally waiting for dermatologist appointment. He has become increasingly snuffly and struggling to feed over last few weeks and does not appear to have a cold as there is no mucus whatsoever. Can i ask has anyone else experienced this? I am concerned that this hemangioma is causing pressure in his airways/sinuses. He has had a us scan (done by radiologist) and they said it is a vascular one being fed by an artery as there are high levels of vascularity ( think this is what he said he wasn't very clear). It begins on the bridge of his nose and extends out across his eyelid/brow. Am also worried about prognosis and treatment as it is so near his eye. Any advice would be much appreciated. The care here has been really poor so far. Many thanks

Last edited by sarahboyce35 : 02-19-2014 at 06:20 PM.
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Old 02-19-2014, 07:00 PM
missy missy is offline
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Hi and welcome!

Where are you located? I think your idea that the hemangioma might be putting pressure on the sinuses is one that needs investigation. I'd like to be able to hook you up to some help.

Missy
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Old 02-19-2014, 10:43 PM
sarahboyce35 sarahboyce35 is offline
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Hi there, i'm in northern ireland so pretty far away! Any help or advice appreciated. Thanks for your help.
Sarah
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Old 02-20-2014, 05:03 AM
smurph smurph is offline
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Hi Sarah,
I was thinking that it might be helpful to email Dr. Aaron Fay (go to Ask the Experts) since he specializes in hemangiomas related to the eye. You should also email a photo. Perhaps he will be able to give you his opinion and more information about your son's hemangioma. I also noticed there are a couple of doctors listed here (go to Find a Doctor and click on Ireland-although I'm not sure how that would work since the doctors are in Dublin and you are in Northern Ireland.)
Also, I noticed that Dr. Waner, one of the best in the world may treat patients in Liverpool. Here's some info on that:

Alderhey Childrens Hospital Eaton Road
Liverpool

Beginning in January 2009, Dr Waner will be visiting Liverpool on a regular basis to see patients and perform sugeries, working in conjunction with Mr Liew Consultant plastic surgeon.
We have a large vascular birtmarks service including a multidisciplinary team and a large vascular service.
Patients may contact:
cath.gorst@alderhey.nhs.uk

I am not sure if it is current, but I thought these may be some possible avenues to pursue. Let us know how it goes! Good luck!
Shannon
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Old 02-24-2014, 05:04 PM
momof3inpa2009 momof3inpa2009 is offline
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My daughter has one almost exactly as you have described. It's a deep hemangioma in her eyebrow area more towards the nose and it also makes her eye lid droop when it's at its puffi-est. I urge you to check out my blog -read from the beginning till the end (most recent date) My daughter still has hers' it has not went away yet but we did propanolol, timolol, and saw specialists. I truly believe in propanolol because it helps shrink it some so that later on there isn't as much or any extra skin left once the hemangioma does go down on its own some. If you have more questions you can message me. I don't check in much but I try to once in awhile. Good luck to you!!!!
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Deep hemangioma on left eyebrow towards nose
Started propanolol Feb. 11th, 2010
Off of propanolol aprox. June 2011
Takes 3 doses per day at 1.3ml
2nd Weaning of prop. not a success back on it March 22. Only one dose of 1.3ml now- 19 months old Did Timolol gel for awhile, stopped, & back on - 4 years old. Off of Timolol -doesn't seem to be doing anything. Surgery was a success!!! April 2014
http://lexihemangiomapropanolol.blog...roduction.html
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