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-   -   Dr. Mulliken at boston children's (http://birthmark.org/board/showthread.php?t=2696)

kandbsmom 12-23-2007 12:08 AM

Dr. Mulliken at boston children's
 
Hi everyone,

In a previous post of mine, I wrote about how my daughter is scheduled to have surgery on Jan.29 on her hemangioma where we live now in NC - however, I did get an appt. scheduled with Dr. Mulliken at Boston Childrens for Jan.18 since we are going up there to visit family and friends anyways... I have sent him email pictures, and he seems to think the hemangioma does not need to be removed since it will "go away on it's own", which is a different opinion than what I have been told by Dr's down here. Since where it is on her forehead - when she starts to walk she can easily hit it, bald spot being left, cosmetic reasons, could take up to 10 years to go away, etc... he seems to disagree.
So what is everyone's opinion on Dr. Mulliken if you have seen him? Is it worth my time, or should I just go with the Dr.s opinions here in Charlotte?
For what it's worth, we are for removal of it due to the above reasons...
thanks!!

nickbar 12-23-2007 01:00 AM

First, I want to comment about the term "cosmetic"...it really isn't about cosmetics. We are made to feel that way by some doctors or outsiders. Dr. Waner explained it very well when he said... Getting a nose job because you aren't happy with you nose from genetics is cosmetic... having surgery on a hemangioma (or other) is reconstructive surgery, not cosmetic. I thought this was important statement not only for insurance purposes, but to help us as parents deal with the conflicting thoughts in our heads about if we are doing surgery for the right reasons. Think of a child born with a cleft lip. There was a day when this was not corrected and not covered by insurance...considered cosmetic. It is abnormal and now is accepted as a needed surgical practice.

Dr. Mulliken is highly respected among the vb community. He is considered the father of vascular birthmarks. He might in some people's opinion be conservative on recommending surgery. What you mentioned above is something not typically considered (considered from the parent's perspective) by some physicians, in my opinion. What is the benefit (pros and cons) doing surgery now...or waiting and doing it later? I think in the end you need to follow your instincts and do what sits best with you.

GOod luck and keep us posted.

Corinne

lpm 12-23-2007 12:02 PM

I spoke with Dr, Mulliken when my youngest was about the same age as your child. He recommended that she remain on the oral steroids (which she started at 2 months - I wanted her on them earlier) until about 10 months. He thought the hemangioma was too large for an injection to be effective, and did not want to remove it until aroiund age 4.

Dr. Mulliken has a lot of knowledge about hemangiomas, but he is conservative. He did think she would need surgery at some point - but so did all of the doctors we saw (even the very conservative).

My youngest had/has two hemangiomas - one on the right cheek just below the eye, and one on top of the head. She has been on oral steroids, had a steroid injection, and two plastic surgeries. She could use some laser at some point too (she is now 3.5 years old).

The decision is a personal one, but I (personally) would wait a little while if it is not growing rapidly. If the doctors are willing to remove it now, I assume they would be willing at 1 yr, 2yrs, or 3 yrs old? I personally know a couple of kids that had hemangiomas in a very similar location, and they involuted pretty well. Also, consider the growth - if it is still growing, it could grow back after surgery. My youngest had one on top of her head removed too - it was the "small" one and not growing at time of removal (11 months) - but it came back and you can still see it (but under some hair). And while no one wants this to be a consideration (and of course I don't know if this is a concern in your case), there is the financial side. Try to get the operation pre-certified - if not you may have to pay - even if you eventually win over the insurance company, you may have to pay the doctors in the interim.

No one can foresee how well a particular hemangioma will involute, so the decision is one you need to make based in your "gut feeling" - good luck and try to focus on all the other "baby stuff."

kandbsmom 12-24-2007 02:05 AM

thanks -
I like that statement by Dr. Waner, how true.
Our main reason for removing it now, is due to when Kayleigh starts crawling/walking, we are terrified that she will hit, scratch, or bump it and it will end up being an emergency situation due to loss of blood. It's in the perfect location for this to easily happen.. Our other reasons are a bald spot and social/self esteem issues later on if it doesn't go away, and to be honest we just want this behind us.
I didn't realize that it could grow back - does this happen often? And how do you know it is done growing? Kayleigh's rapidly grew the first 2 months, and has slowed down alot (but she's not even 4 months old yet). We haven't really noticed much growth the past 1 1/2 months, but then again we see her every day so it's hard to tell.
Our insurance already preapproved the surgery, however we would pay out of pocket if we had to. We just want to do what is best for her. At this point we feel surgery is the best option, but of course, we question if we are making the right decision for her.

thanks!!

lpm 12-25-2007 02:14 AM

I'm not sure how often they grow back - not too often - but perhaps someone else can comment.

As far as the growth goes, sometimes hemangiomas "take a break" for a month or two, then the growth starts again. Of course, there are plenty that finish growing after a few months...you really can't tell until you have several months with absolutely no growth.

I understand the concern with bumping the hemangioma (and again, someone else please comment), but while I have seen that concern voiced by many on these boards, I think it rarely happens. The emergency room trips are typically from rapidly growing hemangiomas that ulcerate. My youngest did a face plant on a LEGO base board about two weeks after her first surgery. Of course, plenty of blood, but in about 10 minutes we had the bleeding stopped and cleaned up (it was just a small piece of scab that came off). I'd say it was similar to the amount of bleeding from the busted open chin (youngest and middle kids both have done that).

Good luck with whatever you do - this "issue" will be behind you before you know it - there are plenty of others to come (just ask my 12 yr old)!

mjones0706 01-21-2008 01:21 AM

We saw Dr. Muliken for my daughter's hemangioma. I was surprised that he did an injection of steroids, it seemed as though most people were telling us we needed to wait it out. His staff there is wonderful but I felt like we were rushed in and out. I had a lot of questions and it seemed as though he assumed we knew a lot more than we did.


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