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jennr11 02-20-2013 04:32 AM

Frustrated with Dr
My daughter (now 11months) has a large hemangioma on her forearm/wrist/thumb. We've been seeing a dermatologist and have been on propranolol for 9 months now. At our last dermatology visit he thought we would be ready to come off the medicine soon and we were ready to at least start seeing a plastic surgeon for future planning for laser treatment. The propranolol did help her hemangioma, but by the time she was started on it had already grown so much and she had multiple ulcerations. She now has scars from her ulcerations and the hemangioma is smaller, but still very visible.
We had the plastic surgeon visit today and I have NEVER left a drs office with such a bad feeling in my heart. We waited over an hour past our appointment time (I know this happens, no big deal) to see him and he literally spent 5-7 mins with us before walking out of the room. He instantly starts talking about excision with multiple skin grafts and multiple surgeries when she's a bit older. He repeatedly told me "her arm will never look normal no matter what i do" and never once spoke to her or looked her in the eye. He repeatedly cut me off when I tried to speak and didn't listen when I did speak. His only "plan" for now was to stay on the propranolol until the prescription runs out (next month) and then if it starts to grow again he would be willing to do steroid injections on her. I'm sorry but from all that I've read is that not a backwards approach to treatment at this point? When I was finally able to get a word in I just said "Im sorry but we were told we were being referred to talk about laser treatment." His answer was that "some" drs might do that but the laser will burn her skin and do more damage. He then said "You can come back in 3 months and I'll look at it again." He will never lay a finger on my daughter again. If he can't take the time to actually listen to me in the office then I would hate to think how he is in surgery. His credentials claim specialty in hemangiomas and hand surgery. I saw none of that.
I understand we don't always get what we expect from drs or life in general, but when you've been hoping for this appointment for almost a year now you can't help but feel defeated. I plan on calling her dermatologist tomorrow and telling his nurse everything that happened and asking for a different referral.
Sorry I really needed that vent with someone who can understand.

smurph 02-20-2013 05:30 AM

Wow. That must have been so disappointing. Some surgeons are not known for wonderful bedside manners, but that was extreme for sure. They need to remember that it's not just what they say, but how they say it. My daughter's surgeon was a little bit like that although he did speak nicely to us and to our daughter. He was just rather abrupt at times. I remember my mom telling me about the surgeon who operated on my brother's kidneys...terrible bedside manner, outstanding surgeon. But in that initial consult, it is important for you to walk away feeling confident in his abilities and comfortable. It doesn't sound like that happened for you.

I think your plan sounds like a good one...going back to the dermatologist and seeing if you can get a referral for a second opinion. Then you will be able to see if the opinion is the same or different. You can also email Dr. Levitin and/or Dr. Geronemus here on this site, and they might be able to give you their opinions as well. Make sure you send pictures. Then you will have some more objective info to go on.
I have been in the situation before of trying to make decisions about surgery and laser and it is really stressful. Don't lose heart. It's a bump in the road. But if I were in your shoes I'd be venting too!!! :) Keep us posted!

By the way, one of my daughters had a hemangioma on her hand and wrist too!

jennr11 02-20-2013 02:38 PM

Hi Shannon, you and I actually FB messaged a bit almost a year ago. I found the pictures of your daughters hand hem on here when my baby was first born and the similarity between their hems is remarkable. It does help to see the after pictures of your daughters and what a good ending her story has had. I will def be emailing Dr. Levitin, it was actually the first thing that popped in my head when we left the appointment yesterday. The dr yesterday didn't even so much as glance at her chart yesterday before he came and got us himself from the waiting room. The nurses were apologizing for him saying "sorry we have an impatient dr who can't wait for us to get him patients back." He then took us down a hall and started opening doors, walking in on patients, until he found an empty room to stick us in. He first said "You need to try propranolol" I said "yes, we've been on it since May." That's when he jumped straight into talking about surgeries. I just felt like maybe he wasn't as experienced with the laser as we had hoped/thought he would be. The whole experience still feels like a nightmare even after having a night to sleep on it!

smurph 02-20-2013 09:26 PM

HI! Sorry, I forgot! I have lost a lot of brain cells since my twins have been born! :) Hopefully you will be able to get in to see a different doctor. I don't like it when doctors don't even look at the chart!!! I would feel the same way as you do. Good luck! Do you have any recent photos?

jennr11 02-21-2013 05:05 AM

2 Attachment(s)
Shannon I do not expect you to remember a random FB message from nearly a year ago :)
If this works right I've attached 2 pictures.
The first is my daughters arm at 10 weeks, the day before we started Propranolol. (her ulcers did continue to get worse for a few months)
The second picture was taken today. It is a little misleading because the lighting makes it looks a great deal lighter than it does in person and her scars from the ulcers aren't showing much here either. It's sometimes still very dark or bright red.
I have TONS of pictures of her arm over the last year. It helps SO much to be able to go back and look how far we've come now. Breaks my heart for her in the early days when it was non stop screaming in pain all day :(

smurph 02-21-2013 05:27 AM

Oh wow. What a change. You can definitely see the results of the treatment. My daughter's started fading on its own right around eleven months and it faded significantly over the course of that second year. Actually that is true of my older daughter too (with her lip.) The most drastic fading happened over like 1-2 years of age and it then it was slower. So maybe that will also happen with your daughter? The other factor besides the fading of the color though is the remaining stretched out skin and fatty tissue left behind (I'm not sure if I'm explaining that correctly?) That might be a factor with your daughter too, since it had grown so large. Well, I hope you are able to get more information and are able to come to a decision about a plan for next steps, whatever they may be. I think the stress is definitely in the "not-knowing." Once you settle into the next phase of this journey, I bet you will feel better. It really does look so much better. And I totally get what you were saying about the nonstop screaming all day from ulcerations. I was there with my daughter's lip hemangioma. It was not easy at all. You will get through this! My older daughter is actually going for her last laser treatment on her lip hemangioma this Monday. I am very nervous about it because she will be doing it without anesthesia for the first time. I am looking forward to be it being all done. She is seven I am afraid mostly about her reaction to the whole thing. It's definitely better to take care of it all when they are little!!! I told her I will take her for a pedicure as a treat after the bruising goes away. Yikes!!


jennr11 02-21-2013 05:45 AM

I know exactly what you're trying to say :) I feel like the left over fibro-fatty tissue wouldn't even be noticeable once her arm isn't just all "baby fat," if that makes any sense. It's the color that screams look at me! I know I'm more worked up about it now because of the dr's multiple "her arm will never look normal" comments and short sleeve weather being right around the corner. Jerk! On a side note, I did talk to the derm's office today and told them everything that happened. There are other options for plastic surgeons for us to see so we are going to wait it out a little longer and then give it another go with someone new. Your daughters hand hems did all finally go flat though, correct? I can't tell you how many times I've looked at her pictures over the past 11 months. Seriously, it's been such a blessing to be able to see those at the beginning of our journey! Thank YOU!
I imagine your older daughter is one tough cookie at this point and we'll pray for her that she handles it all well. Pedicures can move mountains in my world! :)

smurph 02-22-2013 05:12 AM

ha ha!! I'm doing a pedicure for laser surgery and I usually give my kids McDonald's milkshakes when they have to get shots!!!! Not exactly healthy, but it takes the "sting" it's the only time they get milkshakes!!

Thank you so much for your comments about Rachael's photos. This site helped me so much when we were in the early stages of our journey and that is why i have stayed around through the years and stayed involved. I think we can all learn so much from each other's experiences. Rachael's hemangioma totally went flat and faded on its own. I can sort of feel a tiny bit of "spongy-ness" on her wrist and a "shadow" of her hemangioma on her hand but seriously, no one would ever know she had it. When it was at its worst, it was fire-engine red and looked like it was about to burst at any moment. She had no ulcerations though and it covered a smaller area than your daughter's. But I think it will be really "interesting" for lack of a better word, to see the natural involution of your daughter's hemangioma over the course of the next year. It's so hard to wait, especially with the summer months coming, but at least she is too young to really know that it's an issue. It's just hard for us mothers to have to keep dealing with the comments and second glances. You can do it though. I did it (twice!) and I can tell that you are very strong and will be just fine...even though it can be annoying and stressful at times.

I need to update my daughter's photo album. I'll post a new picture soon! If you don't mind, let me know what the next specialist says! Have a great weekend! :)


jennr11 02-27-2013 10:42 PM

I finally sent a message to Dr. Geronemus and sent him some pictures as well. He said he felt she would do well with laser treatments. Yay! So now I feel like I can forget the nightmare plastic surgeon visit ever happened. We are now greatly considering flying to NY (from Nashville, TN) for treatments.

smurph 02-28-2013 02:17 AM

Wow! That's great news!!! Good luck with the treatments!

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