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-   Help and Resources for Hemangiomas (http://birthmark.org/board/forumdisplay.php?f=9)
-   -   Eyelid Hemangioma - Lots of Questions! (http://birthmark.org/board/showthread.php?t=2671)

emonaco 12-03-2007 04:23 AM

Eyelid Hemangioma - Lots of Questions!
 
Hello,

I am so relieved to find this site. Our 7 week old daughter has a strawberry hemangioma on her left eyelid the size of a pea. It started out small and has grown significantly and is starting to get puffy. My concern now is that soon she will not be able to open her eyelid because it is already so puffy. We have been getting the typical responses from doctors about taking the wait and see approach and I'm very worried that it will affect her vision. Already it is starting to look like it is rubbing against her eyeball. I would rather avoid problems now then wait for them to happen and am very interested in the surgery option.

We do have appointments next week with a pediatric opthamologist and also a pediatric dermatologist. What questions should we ask them? What do we do if they continue to tell us to wait? Do I have any choices at this point? Is surgery possible if the hemangioma is still growing or is in only an option once it has stopped growing? How old do they typically do surgery on infants? What are the risks since she is so young? Does insurance cover it? Can anyone recommend a good doctor that might consider surgery for her in Los Angeles? I've heard there is a good one in LA but I can't find his name/contact info.

Thank you so much in advance.

Elizabeth

nickbar 12-03-2007 05:06 AM

Hello and welcome to VBF! You came to a great place for information and support. I would also like to invite you to join the msn vb support group as well. http://groups.msn.com/vascularbirthm..._whatsnew.msnw We have almost 1500 members and the support is amazing.

Glad you have appts. with ped. Ophthal. and ped. derm. I have questions listed on this site or on the vb support group (msn). Email me and I can attach the file if you prefer. They are basic questions that might help you start your own list. It is very helpful to have the questions written out for your appt. Express your concerns (very valid ones I might add) about her vision.

I would also encourage you to email Dr. Fay on the front page of this site "ask the expert". If you don't hear from him within a week, let me know and I can forward directly to him. He is an occularplastic surgeon with a lot of experience with eye lesions. It depends on the lesion if the doctors will recommend surgery and when. If it is causing vision problems they;ll want to do surgery asap. It is difficult to find experienced physicians...but if L.A. is closest for you... you would likely want to contact Dr. Reinisch. His contact info is new as he is not at L.A. Children's anymore.
State or Country California
Last Name Reinisch
First Name John F.
Title/Specializing In Surgeon
Hospital/Clinic Cedars Sinai Medical Center
Address 250 N Robertson Blvd. Suite 506
Address Beverly Hills, CA 90211
Work Phone 310-385-6090
Other Phone
Fax
E-mail JFR654@aol.com

Surgery can be done while it is still growing (that would be necessary if the lesion is growing rapidly and blocking vision/putting pressure on the eyeball. The risk is rebound growth if the entire h. is not removed. Rebound can be minimal though. Again, it just depends on the necessity for timing on the removal.

yes, insurance should pay for this and they have many times. I don't know for sure what type of insurance you have...but the VBF has a great resource for fighting for out of network care or appeals if you find yourself in a situation with your provider.

Feel free to email me anytime

mmarrari 12-03-2007 02:04 PM

hi Elizabeth,
Our daughter Valentina, now 15 months old, also has a H on her elft eyelid. It started growing at 10 days and by the time she was 2 months old it was very big and pushing her eyeball. We monitored her vision with a ped opht and her astigmatism in that eye went from 1 to 1.75 to 2.5 to 3 in weeks. At the time we were very scared of surgery even though our pediatrician had strongly recommended it, so we went the oral steroid route. She was on the meds for 9 months with great results. Her H stopped growing and even shrunk a lot. However her eye didn't recover, so we ended up having to have 2 surgeries. The last one was 2 weeks ago at 15 months old in NY with Drs Waner and Levitin. I want to comment on what Corinne said about rebound growth also. Valentina's first surgery was 2 months ago at 13 months. The H was "supposed" to have stopped growing by then so her surgeon only did a partial resection. This way the scar would be minimal and the remaining H would go away on its own. Well the H had different plans and grew right back, increasing the astigmatism again. That's why we had to have the 2nd surgery. Let me know if you want to see pictures.
In terms of insurance, we've seen a dermatologist ever month, had 2 surgeries and 3 laser surgeries and they have covered everything. We even got them to cover an out-of-network Dr. (Dr. Waner), but not without a fight. I have plenty of appeal letters and request letters so let me know if you run into problems in terms of coverage.
I have consulted with Dr. Reinisch over the phone and he is great. I know a lot of parents that took their kids to him and couldn't be happier. Good luck and let us know how your appointments go!
Marina and Valentina

emonaco 12-04-2007 08:32 PM

Thank you so much. This is so helpful!

Elizabeth

madelinesmommy 01-01-2008 01:57 AM

My daughter had a Hemangioma on her left eyelid and we took her to a pediatric opthamologist who was dead set against surgery. Instead he recommended an oral steroid (6 ml of Prednisolone daily) and within the first 24 hours we noticed a drastic improvement. It has been 2 months now and the Hemangioma is 99.999999% gone, plus we get to ween her off the steroids in February. For those who haven't tried an oral steroid, please DO give it a shot - it has an 86% success rate and has proven miraculous in our case. My best wishes to all.

lo1 01-02-2008 04:22 PM

Hi

I would give the steroids a chance too. They did not work in my daughter's case - she was on 15mgs per day and it has not worked at all but maybe she was in the minority :mad: .

Lo x

stevenwright@karoo 02-11-2008 04:20 PM

hi my daughter is 2 years old she has a hemangioma on her left eyelid which started about 2 weeks after she was born we were told to take the leave it alone approach, been to see eye specialist again today told us he had been presented with a late stage case and a window of opportunity had been missed she is now left with a smaller left eyeball,a lazy eye and bad focus (5) she is currently wearing glasses an an eyepatch to correct the lazy eye and hopefuly improve focus i would get as many opinions as possible and quickly.


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