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  #1  
Old 08-02-2009, 12:35 PM
Tessamarie Tessamarie is offline
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Default Cosmetic Surgery Outcomes?

We just got back from HSC and were told that our daughter would need cosmetic surgery on her forehead in the future after her H is gone (They are going to "wait and see" still unless the next specialist they are sending us to to assess her vision/optic nerves suggests other route). Either way, we were told cosmetic surgery would be the only way to correct sagging skin that will be left behind. Has anyone else had the surgery? What was the result? How much should we expect it to cost? (We are in Canada and wonder if our health plan will cover or not too).
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  #2  
Old 08-02-2009, 03:38 PM
EFMama EFMama is offline
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Felix hasn't had the surgery yet, as it hasn't involuted, but that's the same thing we were told. (Also in Canada) The specialist we saw said that any scarring from the corrective procedure would be significantly less, if at all, than what we could expect from removing the hemangioma now.
__________________
Me - Aimee - Spot on liver
Elliot, 9/20/06 - H on back (nearly gone)
Felix, 7/28/08 - H on forehead (in involution)
Taking the 'wait and see' approach, for now.
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  #3  
Old 08-02-2009, 05:20 PM
mjwrw mjwrw is offline
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Hi,
I may have corresponded with you on earlier posts so my post here may be irreleveant..but just in case
My daughter had a large hemangioma on her forehead and it was removed at 13 months of age. Dr. Reinisch in Los Angeles did the surgery and we are thrilled with the results. We did not want to wait, dealing with any emotional repurcussions she would face in the meantime, in order to have surgery at an older age. In our case she does not even remember the hemangioma or the surgery and her scar is very minimal. Our insurance covered the procedure, but we are in the US.
Good luck to you!
Rory
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  #4  
Old 08-03-2009, 02:02 PM
Tessamarie Tessamarie is offline
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EFMama- any chance you are in Ontario too? The docs here just want to "wait and see" but when I looked at Rory's pictures of her daughter who got it totally removed, the difference is just stunning and amazing, so part of me wants to hurry up and get it removed and then do whatever cosmetic surgery is needed. However, they are pushing us to wait it out, let it go away on its own (if it will!) and then do surgery after if needed
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  #5  
Old 08-03-2009, 03:10 PM
mjwrw mjwrw is offline
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If you are interested in other opinions regarding sugery or other options, you may try just contacting surgeons or other doctors. I found names and recommendations from other parents on this site and just started emailing and calling. I was able to email Louise's picture to the doctors and they were very good at getting right back to me. In our case we narrowed it down to Dr. Waner (NY) and Dr. Reinisch (LA). Then, one evening about 8pm Dr. Reinisch called us at home and spoke to us for about 45 minutes. He was amazing, caring and made us feel completely comfortable. We ended up scheduling surgery with him, all at a distance as we lived in Idaho at the time. His office helped us figure out how to handle insurance claims and the other aspects. I know he does surgery on children from all over the world so they may be able to advise you on the cost and coverage aspect. He was at Children's Hospital in LA at the time we saw him but he is now at Cedars Sinai.

WHen they put Louise in my arms after her surgery it was an amazing experience. We always thoguht she was beautiful but she looked like a different child. We are very glad we made the decision we did. However, it is a very individual and personal one.

Good luck!! Please keep me posted
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  #6  
Old 08-04-2009, 01:01 AM
EFMama EFMama is offline
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We're in Nova Scotia. From all the Canadian parents I've talked to, across the country, the 'wait and see' approach by the doctors is the most common, unless the hemangioma was interfering with normal function.

We got a referral to a pediatric plastic surgeon. On our way to the plastics clinic, we met up with another family going to the same clinic. Their little girl had one on her cheek and she was under going treatments to have it removed. I didn't get the specifics, but from what I could tell, it was a "cosmetic" hemangioma, the same as Felix. So the parents must have pushed for removal and the dr agreed.
__________________
Me - Aimee - Spot on liver
Elliot, 9/20/06 - H on back (nearly gone)
Felix, 7/28/08 - H on forehead (in involution)
Taking the 'wait and see' approach, for now.
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  #7  
Old 08-04-2009, 01:05 AM
EFMama EFMama is offline
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Also - at an unrelated appointment this afternoon, I met a woman who's daughter had an involuted hemangioma on her finger. It was flesh toned and saggy, and probably the size of a dime with a bobble top. She said that it once was larger and red. The little girl was maybe 7? I'm trying to picture Felix with the same such saggy bump on his head. It's not what I imagined when the specialist described it, and for the first time, I'm now questioning the wait and see approach.

Not sure why the saggy, skin-toned bump bothers me more than the prominent hemangioma itself...
__________________
Me - Aimee - Spot on liver
Elliot, 9/20/06 - H on back (nearly gone)
Felix, 7/28/08 - H on forehead (in involution)
Taking the 'wait and see' approach, for now.
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  #8  
Old 08-04-2009, 05:16 AM
lovemybaby lovemybaby is offline
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Hi. My son (18 months) has a compound H on his forhead. We have been getting laser treatment through our HMO Kaiser. But the deep part is about the size of a quarter and sticks out at least a half inch. We had spoken to Dr Reinich last June and he said our HMO would not cover it because it is considered cosmetic. I am just wondering if your child's hemangioma was similar. Prehaps we need to change insurance to try and have it covered? We had wanted to do surgery last year but my father was diagnosed with brain cancer an we went on the journey with him until he just recently passed away. So,i am now looking again at my son's H which shows no sign of involuting...and he negative comments never cease...our pediatric derm said I should hand out businedd cards explaining his condition...I am wondering if the scar he would get now is that much worse than what he would be left with if we let it go naturally. I am afraid it will take 10 years and still need to deal with baggy skin issues. Thanks for any information you may have. Congratulations on your successful surgery. I wish you the best.
Mariah
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  #9  
Old 08-04-2009, 02:21 PM
quinnysmom quinnysmom is offline
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I so feel your pain. My son Quinn is 3 now and had a very destructive hemangioma which also ate away his upper lip. To make a very long and frustrating story short he has just had two surgeries in New York with Dr Waner.

The derm team at HSC is amazing and supportive but the plastic surgery department is a whole other story which I will tell off of the board out of respect of all the amazing people at HSC who cared for my son who has PHACE Syndrome.

We were told 3 times he would have surgery until one day they (plastics)told us it was not an option devastating our family

Quinn has had lip reconstruction, Fraxel laser and liposuction of the cheek as well as removal of an orbital hemangioma.

These things are covered by OHIP BUT at this point they do not do surgeries of this kind until age 9 or 10. They are not correct in saying there will be a better cosmetic outcome if you "leave it alone" my son is proof of that. In some minor cases it is certainly true but this is a very very big issue up here one that I have been advocating for and fighting for 3 years.

Cosmetic outcomes depend on who is doing the surgery and that is the key. They wait until 9 years of age because they do not want to take the risks but they also have made no attempt to learn new techniques. They still have the old school way of thinking which truly is sad in a world class hospital like that. I love and adore that place and donate every month but something needs to change with the way they handle the plastic surgery aspect of hemangiomas. Our children have every right to treatment.

Jen
Mom to Quinn http://www.themightyquinn.ca (his website and blog lots of pics)
Age 3 Diffuse Segmental Hemangioma
Multiple Serious Ulcerations,Scarring
PHACE Syndrome
Prenatal Stroke
Epilepsy
Autism

There is a contact link on his website if any of you want to get in touch there is a lot more but I don't want to make it public
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