Anyone have a child with a deep H? - Page 2 - Vascular Birthmarks Foundation Forum
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  #11  
Old 06-22-2009, 04:29 AM
crofte crofte is offline
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Question Update

Hi Megan,

We are currently drowning in our decisions....what should we do, what should we do??

We heard back from Dr. Waner on Friday. In the meantime, I contacted my sister-in-law who is a Dr. at the Cleveland Clinic and her ask a colleague their opinion about the situation, and was told that it is traditionally appropriate to leave hemangiomas alone, unless it is a threat to her vision. Since the H is in her peri-orbital (sp?) space, we should see an opthamologist and get his opinion. If it is affecting or could possibly affect vision, we should consider (1) steriods and (2) surgery as a last option.

We saw the opthamologist on Wednesday, and he gave us the same answer. He said that it was not currently affecting her vision and he did not anticipate that it would. The only main threat was only slightly possible, and that would be that the H could affect the power of her eye and cause lazy eye, or ambliopia--he said it was really not a big deal and he didn't believe it would happen...I, however, don't think that a bump and a lazy eye is "not a big deal"...

Dr. Waner gave us our options. He said we "could" do nothing, but he would recommend treatment of either propranolol or surgery because the H is so visible. My husband is really hesitant to do the surgery and would rather try the drug. I am nervous about the side effects and how to identify them in an infant, and, to be honest, would rather have the H removed at this point. At least then it would be done and over with and we would not have to worry about the "what ifs" (will it grow, affect vision, etc.). He said that deep H's will usually leave a small bump even after involution is complete, but if the bump was removed it would be possible that her bone (skull) would have a dent in it from where the H sat. So she'd probably need a cosmetic/reconstructive surgery later in life anyway. He said there is very little risk for bleeding (contrary to what we'd been told) and that a child typically loses only a teaspoon to two of blood during surgery.

I asked him what the mortality rate was like. He said that he'd been doing the surgery for the last 10-15 years and probably does 1000 of them a year. He's never lost one child. The main risk then, is anesthesia, and he says it is more likely to die on the way to the grocery store than from that...so, we are considering it.

I've been in touch with a mother who's son just had a deep H removed within the last week. It was in essentially the same spot as my daughter's. She said the surgery lasted an hour and half and that he had a bottle afterwards and went right home. It definitely makes me feel better!

The problem is that we are in Nebraska and he is in New York. I need to figure out if insurance covers it, what the out of network costs might be, etc. Plus plane tickets and cheap hotels!!

I feel very stressed out by all the decisions we have to make....
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  #12  
Old 06-22-2009, 11:33 AM
missy missy is offline
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Get in touch with Corey.. CTournay@chpnet.org He can help you figure out what your costs might be. Also, go to http://birthmark.org/experts.php and ask the insurance expert, Basia, to help you figure out what to do now to see if it can be covered.

Missy
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  #13  
Old 06-24-2009, 03:27 AM
crofte crofte is offline
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Unhappy

Corey has actually left--I've been in touch with the new RN, Maureen.

Turns out that Dr. Waner is not a provider for ANY insurance company...I don't think we can afford the out of network costs and the "over contracted" amounts...

But, I've been back in touch with Dr. Fay in Boston. He is a BCBS PPO provider, so they would be considered in network and we would not have to pay any differently than if we were going locally. Now I just need to double check and make sure the procedure would be covered--probably have it precertified before we make any hard plans.

Has anyone had Dr. Fay perform a surgery? I'm hoping that he is nearly or equally as good as Dr. Waner--the idea of my little one going under scares me half to death and I want to make sure that we have the best that we can afford!!
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  #14  
Old 06-24-2009, 01:59 PM
missy missy is offline
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Dr. Fay is wonderful, yes. You need not have any worries about working with him.

Keep us up to date!!

Missy
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  #15  
Old 06-26-2009, 07:59 PM
natlok natlok is offline
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Oh, yes, we had recently the surgery done by Dr. Fay. He is very professional and experienced. Call me or write me natlokshin@hotmail.com 905-597-0598 for samples. I will be happy to help you by sharing my story.
Natasha
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