Removal Surgery at 4 years - UK or USA - pls help? - Page 2 - Vascular Birthmarks Foundation Forum
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  #11  
Old 02-06-2008, 03:59 PM
valeriad valeriad is offline
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Default From London

Sorry, I sent the same mssg twice.

Last edited by valeriad : 02-06-2008 at 07:16 PM.
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  #12  
Old 02-06-2008, 04:00 PM
valeriad valeriad is offline
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Hi Lo, I'm from Argentine but living in London now. My daughter Sofia (she is 4 now) has an hemangioma in her left eyelid as well. I didn't want to have an op. when it appeared because I lived in my country at that time, with not many options to choose, and I didn't trust the doctor that we saw.
So, we started oral steroids without results, and when she was approx. 6 months old we went for intralesional steroids twice and they worked very well but not enough to reduce it completely.

Now Sofia is 4 and looks very well, mostly because she is growing a lot and the hemangioma always keep the same size (it is not seem to me that it is reducing its size). We have to take her to the ophtalmologist from GOSH, Dr. Nischall, every 4/6 months. He is very good. He told us that if we want we can have an operation now, and take it of with his surgery specialists. He told us that in Sofia's case it is not neccesary but we have to see what happen at school, you know, with the other children when they see Sofia. She uses a patch in her eye to prevent having more astigmatism, 30 minutes per day.
So here we are, having to make a decision about my daughter's hemangioma, and to be honest, I don't know what to do. She seems very happy and a lot of people didn't notice that she has an hemangioma but I wonder if she is going to ask me why I didn't take her to the operation when she grows up and watch herself in the mirror... at 12 or 15 years old...

I wish I could go to NY, to see Dr Fay and Dr Warner but it is not possible for me now. If somebody knows when Dr.Warner is coming to Berlin, could you please tell me?

Here is the website where you can see Sofia's pictures. http://picasaweb.google.co.uk/ValeriaDsofi [/url]

thank you and good luck. (sorry for my poor english)

Last edited by valeriad : 02-06-2008 at 07:21 PM.
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  #13  
Old 02-06-2008, 07:32 PM
missy missy is offline
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Contact Corey and ask her when Dr Waner will be in Berlin. It seems to me he goes every spring.

Dr. Milton Waner
Dr. Alex Berenstein
Dr. Gregory Levitin
Vascular and Birthmark Institute of New York
126 West 60th Street
New York, NY 10023
212-636-3977
Contact Clinical Coordinator directly at:

Corey R. Tournay, R.N., Clinical Coordinator
Vascular Birthmark Institute of New York
126 West 60th Street, Ground Floor
New York, NY 10023
Tel: 212-636-3974
Fax: 212-636-3979
CTournay@chpnet.org
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  #14  
Old 02-06-2008, 07:39 PM
lo1 lo1 is offline
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Thanks very much for your response. My daughter Abbie is giong to GOSH in a couple of weeks time so we will wait and see what they say before we make any decisions, but I understand how hard it is!

I'm sure you will come to the best for you and your daughter.

Thanks again

Lo x
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  #15  
Old 10-26-2008, 08:28 PM
lo1 lo1 is offline
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Hi Michelle

I was so sorry to read this. My daughter Abbie is now 15 months old and sees many NHS doctors including Prof. Harper and Mr Abou-Rayyah (Consultant Oculoplastic Ophthalmic Surgeon) at GOSH. She has already had 3 general anaesthetics so far. As her H is large over her eyelid and head area, Mr Abou-Rayyah at GOSH debulked the eyelid in order that she could at least use her eye. We still have to patch her other eye daily. Abbie had previously had a steroid injection and a high dose of oral steroids which did not work. Abou-Rayyah has said that she will probably require further surgery on her eyelid.

I understand how you feel about people staring or speaking about your child, even now it still hurts, but for the moment Abbie is a very happy, healthy little girl and we dont want to put her through more treatment than is necessary (also increased scarring).

We are going with the wait and see approach at the moment as the docs seem to think it will start to slowly change colour. We will go with their advise for another couple of years or so, if at this time there is no change we will seek treatment elsewhere.

Sorry for the long post but the experience my daughter has had at GOSH has been good - she had an MRI scan under general anaesthetic and her H debulking surgery.

I hope you have a more positive experience in the future.

Lo x
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  #16  
Old 02-10-2009, 10:03 AM
anne robinson anne robinson is offline
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we r debating the same thing for r 4 year old.in london they want to wait but now we will see waner when he visits liverpool and will probably go for surgery
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  #17  
Old 08-23-2010, 03:46 PM
lolaolatunji_80 lolaolatunji_80 is offline
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Hi Lynnmoir, I am new to this site. i also was told to wait and see by Dr Syed at GOSH. Adriana, my daughter, H has not improved and she is now 2. She goes to nursery and comes home sometimes with scratches from where other kids have been pulling at her check so we prefer to have it removed asap. Who did you daughters op? Any advice welcome... TX
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  #18  
Old 08-24-2010, 03:16 AM
ongsyen ongsyen is offline
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about GOSH
http://www.foxsbirthmark.blogspot.com/

and

http://www.birthmarksupportgroup.org.uk
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