Now to discuss the whole reason we were in California - the Microtia/Atresia Conference!
Saturday Chris and I went to Palo Alto to hear presentations by the very best doctors specializing in microtia and atresia. Dr. Roberson talked about creating ear canals (atresia repair), which we found out Cicily is NOT a candidate for and we are not too sad about. Drs Reinisch and Lewin talked about Medpor ear reconstruction. Dr. Brent presented on rib graft ear reconstruction. It was all amazingly informative and impressive to hear and see what they can do! The major thing Chris and I both determined was that all of these procedures are very complex and we only want one of these doctors who do these procedures weekly to be working on Cicily.
Sunday we had patient appointments with each doctor where Cicily was able to come and we could ask specific questions. We saw all the doctors and were impressed with them all professionally and personally. After it was all over, we've decided either the Medpor ear reconstruction or prosthetic ears (not presented at this conference) would be our choice.
Medpor - For medpor ears, the surgeon takes a porous polyethylene implant shaped like an ear and places a membrane and skin grafts from the patients' head on top of the implant. The result is an ear that is shaped like an average ear and sticks out from the head like an average ear. The medpor ear can move when pulled on and the live skin can be moved around on the implant just like a typical ear. This surgical method requires one surgery for the right side, one for the left and possibly a third revision surgery to touch up any little areas. What's the downside then you wonder? While the medpor ears look amazingly good, they still do not have the exact appearance of a natural ear with all it's intricate folds and curves. I have pictures of some of these ears in a powerpoint format, I guess you can let me know if you'd like to see it and I can email you.
Prosthetic - For prosthetic ears, you have an anaplastologist take an ear mold (of Mom's or Maya's ear in this case) and create a latex ear using that mold. This ear can be painted to perfectly match the person's head. It is attached to the head using glue, implanted magnets or clips. This ear looks absolutely perfectly like a natural ear. The downside you ask? The ears last 3-5 years and then a new one must be made, the color doesn't "tan", and you have to take them off and put them on each day. This site has excellent pictures http://www.prosthesis.com/ear_base.htm
We would probably have either of these options done when Cicily is around 4-5. Both methods are rather costly and insurance typically does not pay for much, if any of the cost. I'd love to hear what all of you reading would prefer if it were your little ears in question, so please vote in the poll on the sidebar! Thanks
7 comments:
I would love to answer your poll question, but I would like to see that power point first. Email it to me please, I think you have my email address.
Okay, I looked at the link that you had and those ears look great. Way better than I had imagined. I googled medpor ears too but not much came up. What did come up looked good. I'm sure you'll make the right choice. At least you have a few years to think about it.
Hello, I have to say I feel the same way you do about the ears, We have an appointment made for surgery with Dr R for the Medpore ears in Aug of 09, however just in the last week I have been looking into prostetic ears. I have to say Im confused on what to do. Our insurance will not pay for medpor so we have no idea how were going to get it done. I did talk to Robert Barron about the prostetic ear. I have to say talking to him kinda made me uncomfortable because he was totally againts any ear surgery at all. and hes very aggressive when he talks about it.
sorry to keep going on.Just want whats best. and Im not sure what that is,could you please email the pics you have of the mepore...thank you!
Lisa
Avas Mommie!!
Hey Friend, I haven't seen you in forever ! How have you been ? I am so happy I came across your Blog. What a precious Family you have. I can't help but smile when I see pictures of your sweet little Cicily. She just has a light about her !
We are pregnant with our second, a little Girl, and were recently told she is going to have some challenges. She has a club foot and might have a chromosonal disorder, but we aren't sure yet. I had an amnio done and it came back normal, but there are a lot of markers for other problems. So it is refreshing to see how Cicily has touched your lives and how positive you and your Husband are. I imagine you were scared at first too. We are terrified because we don't have answers yet. I am only 5 months pregnant and so we have a long way to go !
Stop by and say hi whenever you can : millironfamily.blogspot.com
Kami Milliron ( Lulloff )
THANK YOU so much for comment on my Blog, I needed to hear from someone who understands the emotions I am going through. I feel silly for feeling this way sometimes, but then I feel like it is MY right as a Mother to feel this way.
I would LOVE to get together ! Please let me know your schedule and we will plan something. I am a stay at home Mom and I really don't do too much. Sometimes I go and help my Mom because my Dad is dying from Cancer and only has a few months ( maybe even weeks ) left. So I help her out and I " babysit " my Dad : ) But I can work around that. So please let me know what is easiest for you.
Thanks for taking the time to leave me a comment. It really helps to hear from people who understand.
Oh and I voted for the Medpor ear. I don't know much about it, but it sounds better and more convenient for a Toddler.
I would vote in your poll, but there's no choice for "keep the little ear!" I am an attorney/stay at home mom, my daughter is missing an ear, and we've always taught her to be proud of how God made her. We went to California from Indiana to investigate surgery... no thank you. That's a decision for her to make. She's nine now and could care less if someone else doesn't like her little ear. She's had a few minor incidents of teasing, but more or less tells kids like that to cram it. She's a beautiful, strong, intelligent girl, and if and when she decides to do something about her ear, we'll support her. Good luck to you.
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