Surgery Route: What do I ask at first visit? - Vascular Birthmarks Foundation Forum
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  #1  
Old 02-17-2012, 01:13 PM
beef5stew beef5stew is offline
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Default Surgery Route: What do I ask at first visit?

On Monday, I'm taking my daughter to a plastic surgeon at Johns Hopkins to look a the hemangioma on her neck. I know we want to have it removed and minimize any scarring, but I don't know what I should be asking, or if there is some sort of procedure I should know about. Any advice on what I should be looking for would be appreciated.

TJ
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  #2  
Old 02-18-2012, 07:50 PM
smurph smurph is offline
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I'm not sure how old your daughter is but I guess I would ask about your different options. What do they think the result will look like if it is removed? scarring? What do they predict the result will be if it is not removed? Do they think it would eventually go away totally on it's own or not? scarring? What would the anesthesia be like? How long would the procedure take? Are there any unusual risks seeing it is on her neck? Has the doctor had a lot of experience removing hemangiomas on this location? What's the best age for her to have it done? Insurance questions? Do they have a person in the office who deals with the insurance aspect (submitting it and appeals, etc.)

I don't know. These are just some questions that popped into my head. My daughter had surgery on her lip hemangioma almost 2 years ago when she was 5 years old. If your daughter is older like mine was, I would see what kind of programs they have to help children with the surgery...how to best prepare her, etc.

Then once you get your answers, I think it can't hurt to get a second opinion. Maybe email an expert on this site to see what they say and see if it goes along with your first opinion. When dealing with surgery, I think second opinions are a good idea. I'm not sure how your pediatrician is about hemangiomas/surgery, but it might also be a good idea to talk to over with them too...if you want to. Maybe they have some good questions you could ask.

HOpe this helps!
Shannon
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  #3  
Old 02-21-2012, 12:39 PM
beef5stew beef5stew is offline
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Thanks for the response. I printed that out for the meeting.

Looks like she's a good candidate for surgery. She's 2 years old (will be just about 3 at surgery time) and the hemangioma is right at her collar bone in the front. The Dr. indicated he'd do a horizontal cut, but may not be able to get allof the the hemangioma on the first visit. he does not want to pull too much skin together due to the risk of creating a wider scar. After the surgery, we'll come back in 6-8 weeks when they will reopen the incision to cut out the rest of the hemangioma.

Unfortunately, the next opening they have for the procedure is July. So we have a waiting game until then. My wife and I were hoping to have the procedure completed before June. This would be an outpatient procedure and the dr. only does those on Fridays.

I was pretty happy to hear that there is a pediatric anesticiologist on staff, and that the actual procedure only takes 45 minutes. The rest is prep and recovery.

So now I wait....
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  #4  
Old 02-21-2012, 01:21 PM
smurph smurph is offline
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.....and waiting is the hardest part. At least it was for me. When we got our daughter's surgery date it was several months away (just like you.) But it was in February. About a week before, my daughter came down with a bad cold but the hospital told us to come anyway and that they would decide that day if they could do it or not. The anesthesiologist came out about 15 minutes before the surgery and checked her out. They called it off at the last minute. It was brutal. I was so anxious leading up to the whole thing, wondering if they would do it or not, just wanting it to be over, but obviously wanting her to be safe. So they rescheduled for about 2 months later. She got sick again and I told them we weren't coming! I couldn't do that again. Then she got sick the next time too! So it got cancelled 3 times due to sickness!!! By the time she finally had the surgery it was JUNE! I remember my husband was away for a weekend and I didn't leave my house for 4 days.....I wanted to keep my daughter quarantined so she wouldn't get sick again. I didn't let anyone out or in my house!!!! ha! ha! I was crazy!!!!!

So the good news is that your date is in July and there's a lot less sickness/colds going around at that time of year. My daughter was in preschool at the time, and she got the typical colds every few months that winter...it's just that the timing just was rough. I would just be extra careful a couple weeks before and just don't knowingly expose her to people with colds, etc.

Also, that's great that they have a per. anesthesiologist too! It sounds like you are on a good track! Just try to put it out of your mind now for a while and before you know it, it will all be behind you! Here's my daughter's hemangioma photo album if you would like to see it:

http://www.facebook.com/media/set/?s...l=a 18fd285c7

Keep us posted!
Shannon
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  #5  
Old 02-22-2012, 01:30 PM
beef5stew beef5stew is offline
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Default Hmmm..

I never thought about cancellations due to sicknesses. This could work better for me.

I called the Dr. Office and explained that we would prefer an ealier appointment and have some flexibility for "last minute" availablity. The scheduler made a note of this and said to call back on Fridays to let them know we are still interested as fill in. With any luck, their might be a cancellation that will allow us to slip into an earlier spot. I guess it can't hurt to try.
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Old 02-23-2012, 01:29 AM
smurph smurph is offline
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That's a great idea! I bet it might work because I'm sure there are cancellations this time of year due to sickness just like we had to do. Maybe you'll just squeak right in and there will be less time to get nervous.
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  #7  
Old 02-23-2012, 01:58 AM
ruthless009 ruthless009 is offline
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my son is 21 months old and they won't operate on his at this not at Devos Children hospital grand rapids, mi , because yes I wish they would just remove it, make my life easier..... his is inside left cheek, under his tongue and now down his neck, due to no surgery we are trying vinchristine and I'm waiting a 2nd opinion from boston's children hospital...with it being on his head and neck too risky for surgery and due to the size too many vessels involved, hoping boston can help
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  #8  
Old 02-29-2012, 02:28 PM
beef5stew beef5stew is offline
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Default wow..

Persistence helps.

Doctor had a cancellation for a procedure on April 20th so we were able to slip into that spot. So now, instead of waiting until July, we only have to wait until April. Sometimes it just works out.

Beef5stew
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  #9  
Old 02-29-2012, 02:47 PM
nickbar nickbar is offline
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Great news!, keep us posted.
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