Vascular Birthmarks Foundation Forum - View Single Post - deciding what action to take
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Old 01-23-2008, 05:05 AM
emonaco emonaco is offline
Junior Member
Join Date: Dec 2007
Posts: 15


Gosh - you are not alone! We have been in the same situation and we've opted to have Sophia's eyelid h removed in March by Dr. Reinisch in LA. Sophia is now 3 1/2 months. We've consulted with just about every doctor and every specialist on the planet and most have said wait and see with a variety of other suggestions.

Our greatest hopes have come from Dr. Reinisch, Dr. Fay, and Dr. Leviton. All three suggested a steroid injection to start and then surgery if that did not work. Our ped opthamologist also suggested the same. So, we did the steroid injection which helped in the short-term but her h is still big enough to block her vision and since there is a short window of time when it comes to vision, surgery is going to be our next step. I should say that since we've done the injection, the h has stopped growing. We don't know if it would have stopped growing anyway or if it stopped growing because of the injection.

Our pediatrion is strongly opposed to the surgery and thinks we should continue to wait and see or do oral steroids...even with everything the specialists have said!

In terms of coming to the decision of surgery, in addition to the specialists, I also talked/emailed with everyone and anyone I could find who had a similar situation and especially related to surgery as I know there are many risks involved. From everything I've learned in my research, Reinisch and Fay come highly recommended and in fact, we were planning on going to Boston to have Dr. Fay perform the surgery until we realized that Dr. Reinisch was closer to us right here in LA.

In the end, it's been the many families with their own testimony of the surgery that has helped us come to our decison. Since we have not actually gone through with it yet, we still don't know if it is the right choice. But, we feel that in our heart of hearts, surgery is the best option for Sophia for now.

I hope this helps and I will let you know how it goes in March!

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