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-   -   4 yr old with hemangioma on scalp-surgery (http://birthmark.org/board/showthread.php?t=3430)

miriam2 05-11-2009 08:46 PM

4 yr old with hemangioma on scalp-surgery
 
Hello,

I am new to this board and have been reading and find the information extremely helpful.

My daughter just turned 4. He has had a hemangioma on her head since she was an infant. It ulcerated at around 5 months of age. Our ped referred us to Dr Orlow, derm specialist in hemangiomas in NYC. Tried cortisone shots and Regranex which stopped infection, laser not an option as superficial, hemangioma substantially decreased in size (almost flat) but has not changed in diameter in 2 years so he referred us to Dr Zide. From what I have read here, nobody is really fond of Dr Zide, I too found him a bit full of himself but we neverthless scheduled surgery for end June as he does successfully many of these procedures a year. What shocked me the most is the size of the scar my daughter will have, from the hemangioma to top of head to left side of head down and behind ear to wherever he will put the drain (could go to back of the neck). This apparently must be done to completely lift her scalp, , get rid of hemangioma, pull some skin up from the neck to close gap, all this to prevent a bad cosmetic job. We appreciate this as we certainly don't want this to happen. I thought he could just take it off and strech the skin but this can't be done at her age. She'll have to wear a swim cap this summer and a hat to protect from the sun. Her head will be partly or fully shaved which for a girl her age is not going to be easy.

I have not seen any posting (unless I missed them) of "older" children having had this procedure, only infants. Does anyone have a child who had this done around/at 4 yrs of age? I am very concerned as she understands now what will happen but is scared and will be terrified at the hospital as at every doctors visit. Any advice for me? Any good reviews on Dr Zide doing this procedure? I am willing to have a 2nd opinion but it must happen fast. Anybody you recommend besides Dr Waner who seems to be the best?

THanks so much for any feedback and sorry for the long posting.
A very concerned mom.

nickbar 05-12-2009 02:37 AM

Would you mind sharing a photo here or email it to me?
Corinne

miriam2 05-12-2009 07:59 PM

4 yr old with hemangioma on scalp-surgery
 
2 Attachment(s)
Hi Corinne
I have tried to make the files smaller. I hope they go thru.
2 pictures of my daughter's hemangioma at its worst (ulcerated at 6 months of age) and at 3 yrs old last year.
Thanks for your comments

nickbar 05-13-2009 08:23 PM

It wouldn't hurt to email Dr. Waner, and any other specialist you'd like an opinion from (use the ask the expert section of this website) to see how they would perform her surgery. Is the area (skin) flat at this point... any extra athropied skin in the h. area to help pull the area closed?

Corinne

miriam2 05-15-2009 07:20 PM

Hi Corinne,
You must be reading my mind. I have exchanged a couple of emails with Dr Waner who very kindly answered some of my questions. He confirms I am on the right track, at the right place but he would not do such a large incision, just a local incision around the hemangioma. The h. is almost flat and there is not much skin to help close the gap once the h. is removed. So maybe that is why Dr Zide would prefer to do a bigger incision and lift skin up from the neck?? I placed a call into him again to go over the procedure. When we had our consultation, he did say there was a slight chance he could do a smaller incision. I can't remember what the chances are of that. The risk is a problem with the hairline. I certainly don't want my daughter to look like Mickey Rourke... Have you seen the way he looks now? What a bad cosmetic job!!! But her h. is almost flat now. I know it needs to be removed (I certainly don't want her to be mad at us later in life) but we've learned to hide it with her hair, we have gotten used to it. I just don't know if such a large incision and causing a scar where hair won't grow is all worth it. I am so afraid of a bad result!
I tried to make an appt with Dr Waner but he is out of the country and not back until mid June. Our surgery is scheduled for 6/29. I made an appt for 6/16 and we'll do some more research. Maybe I'll ask another surgeon on the list. Anybody else you would recommend?
Thanks so much

nickbar 05-16-2009 04:28 AM

Can you email me?

Corinne

miriam2 05-18-2009 05:43 PM

Sorry, I am not sure what you are asking me. I sent you an email already. Please let me know. Thank you very much

nickbar 05-18-2009 08:55 PM

I received your email and gave you private email address for another surgeon you might ask for an opinion from. I know he has done similar cases in the past...
Corinne


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