Removal Surgery at 4 years - UK or USA - pls help? - Vascular Birthmarks Foundation Forum
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  #1  
Old 08-19-2007, 08:28 PM
lynnmmoir lynnmmoir is offline
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Default Removal Surgery at 4 years - UK or USA - pls help?

Hi
My daughter Abbey has a compound hemangioma on her left cheek. It was Visible at birth and proliferated during the first year. Here in the UK they opt for the wait and see approach and we went along with that until we started to do more reading. She is now 4 years old and involution has been so slow, we are considering surgery before she starts school on 12 months time.

I have had several consultation with our local plastic surgeon who is firmly against surgery. We are seeking a second opinion. However, we have been in touch with Dr Levitin and Dr Reinisch by email, both are firmly of the opinion that Abbey's H will never go away enough that surgery can be avoided and strongly feel she would benefit from surgery before school.

We are starting to come round to this view point too but are keen to hear from anyone in the UK to find out if there are any surgeon's as skilled as Dr Reineisch, Waner/Levitin in the UK who I could feel confident about undertaking the surgery?

Also why is there such a divide between attitudes in UK and US? I am not sure who's advice to trust ?

Has anyone else had the same experience here in the UK that they have left the hemangioma this late and now not sure they made the right decision?

Also has anyone from the UK gone to the states and if so what was the experience like?

Hope to hear from anyone with advice or comments to help us make this very difficult decision - whether to do surgery and whether to go to US ?

Many thanks Lynn
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  #2  
Old 08-19-2007, 10:56 PM
missy missy is offline
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I just wanted to say welcome. Someone else will chime in soon with opinions, I'm sure.

Missy
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  #3  
Old 08-20-2007, 03:18 AM
rhouwman rhouwman is offline
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If you are willing and able to travel to the US, Dr. Reinish and Dr. Levitin are great options. Dr. Waner travels to Berlin a few times a year so you might also want to investigate that option.
Not sure why doctors in the UK and Canada have different opinions about treating birthmarks. Many doctors in the US are similarly resistant to treatment. I think it is because they are not educated with the most up-to-date information on the treatment of vascular birthmarks-so much can be done! I also think that in Canada and the UK, the health system plays a huge role - why treat a "superficial" birthmark that will "go away" when there are so many other people needing "non-cosmetic" care.
Good luck in your search!
Robin.
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  #4  
Old 08-23-2007, 10:47 PM
MrsAmberHarris MrsAmberHarris is offline
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Hello,
I am from Greater London and my 10 month old daughter has a superficial hemangioma by her eye (about the size of a 10p). Dr Levitin suggested surgery although Dr Syed at GOSH suggested we wait and see, so we opted for the latter. Amazingly the hemangioma seems to be changing quite a bit, although we did opt for 2 months of oral steroids which have been great. Have you contacted GOSH? They have been fantastic.
From Amber (India's mummy)
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  #5  
Old 08-24-2007, 08:06 PM
lynnmmoir lynnmmoir is offline
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Default Thank's Amber

We haven't been in touch with GOSH but may do. We also went for the wait and see approach but after 4 years not much has happened. Thankfully Abbey's H is on her cheek so doesn't interfere with anything but now she is going to school, we are strating to rethink. Good luck. Lynn
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Old 09-21-2007, 04:17 PM
foster2kw foster2kw is offline
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Dr. Buckmiller in Little Rock, Arkansas told us the she believes in removing them before they start school. My daugther is only 16 months old and she is already thinking about that. She says that if it doesn't go away by the time she is 4 she will remove it. My daughter has a deep partoid gland H.

I work with kids, Pre-k and K, they can be mean to kids that are not what they think are normal. Glasses..whatever. Think about it. Look at the big picture. I understand it's hard.
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Old 09-22-2007, 04:43 AM
aussiechick aussiechick is offline
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HI, I'm not from the UK, but Australia. My daughter is only 3mths and I am thinking that will get her H removed. We will have to travel to the US to see Dr R (who also recommended removal), but I think it will be best for her in the long run. My Pead has said that she will probably need surgery in the future to remove the residual compound part of the H, so I think it would just be better to do it now. I know it is such a hard decision, so wish you all the best.
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Old 09-22-2007, 06:32 PM
annalbc annalbc is offline
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hello! we just had our daughters cavernous H on her scalp removed by Dr. Hammoudeh (on Dr. Reinisch's team at CHLA) at age 6 mos., and so far, the results are wonderful! I know a few moms on here have had CHLA do their childs surgeries, with wonderful outcomes.....best of luck to you!!!
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Old 01-13-2008, 10:24 PM
lynnmmoir lynnmmoir is offline
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Abbey, had surgery at out local hospital in the end. Debulking and removal of the superficial part - not all the deeper component was removed. We found a wonderful surgeon that visited the local children's hospital. Surgery was last week and stiches out tomorrow. They said her hemangioma was stubborn and not involuting with any significance and best to have surgery before school. Finally a surgeon in the UK that understood our concerns. I will see the results tomorrow and quite nervous but I know that there is a lot of healing to do.
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  #10  
Old 01-14-2008, 08:23 PM
lo1 lo1 is offline
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Hi Lynn

I'm so glad your daughter is ok and I'm sure the results are amazing.

I just read your story and I am in exactly the same position. I'm from the Aberdeen area (so not too far from you!) and my daughter also Abbie (just spelt differently) is 6.5 months old, has a H on her eyelid and behind her eye. She was on steroids for 3 months which did not work, so Docs. in Scotland have refererd her to Great Ormond Street but again they want to wait and see. Dr Fay in Boston says that laser & surgery would be the preferred treatment asap, so I just dont know what to do.

Which surgeon did the op? How did you persude him? Its all a bit more comlex is Abbie's case because of her vision, very few Docs in the UK can operate.

Thanks

Lo x
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