Tuesday, June 12, 2012

owen and microtia; Medpor consult

Start here and here if you want to know a little history on my boy.

Last month, when Owen was about a month old, I contacted Dr. Reinisch at Cedars-Sinai in California. He is a leading pediatric cranio-facial plastic surgeon that specializes in Microtia and the Medpor reconstructive technique.  Reaching out to him was a big step for me.


Since Owen's birth I have been doing extensive research. Literally- my googling started from the hospital bed.  

I can tell you about different structures of the ear, the pro's and con's of different reconstructive techniques and when they originated.  I can give you a bio on the top 5 surgeons of Microtia in this country.  I can even give you a fairly detailed account of the actual surgical procedures.  But I was terribly nervous to take the next step...to take a leap from extensive reading and research to actually reach out to someone and have a consultation about Owen. 

With research there is a lot of possibilities; a lot of hope.  With real conversations there are a lot of potential roadblocks:  Is he a candidate?  Will insurance cover the cost?  What are potential complications?  What if surgery fails to yield good results?  

There is the possibility of hearing something you weren't expecting.  It leaves a door open for disappointment.  It's a scary thing to put your boy out there.



I have to say I have not been disappointed since reaching out to Dr. Reinisch and his team.  My long email, full of detailed questions and concerns, was answered within 24 hours.  The return email had equally the same amount of thought and detail.  They cared about my questions and gave thorough response.  Dr. Reinisch also emailed us that same day from his personal e-mail account offering a Skype consultation.  He even requested and reviewed pictures of Owen's ear before we met on Skype.

After an hour and a half Skype consultation I felt huge relief.   I didn't realize how much anxiety I had about this meeting until it was over.  Dr. Reinisch was very open to answering questions and very frank, which I appreciated.   I knew so much going into our conversation I am not sure if I learned all that much new information but the opportunity to speak live to a specialist and have interest taken in Owen was a huge blessing.



Some important, new, information I learned:

-  Recovery really is minimal to none.  Children who visit California for surgery are usually requesting a trip to Disneyland within the first 24 hours.

- Medpor is a synthetic framework that has the potential to break.  I am concerned about this because I imagine Owen will be a energetic boy who will play sports.  The percent of patients having to return to repair a broken Medpor implant: 5%.

-What is the cost, worst case scenario, if insurance will not cover the procedure.  Roughly $32,000 plus airfare/lodging.  ...wow.

There was a lot of other information discussed as well: the surgical process, timeline, after-care of a Medpor ear, contact information of families that have been through this process, etc.

It was a wonderful, free, consultation.  I would recommend any family looking for reconstructive options utilize the opportunity to discuss the Medpor surgical option with the team at Cedars-Sinai.



Our next step is to find out some more information regarding Aural Atresia repair (building an ear canal) and to find out details on that process to see if we can restore hearing on Owen's right side.  I will post updates on that as I reach out to Dr. Roberson in Palo Alto later this month.







4 comments:

  1. i cant wait to hear what you think about 50 shades!

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  2. Just came across your blog - we have a 3 month old baby with microtia also and have been googling all possible info since she was born. I also live in florida, and my 5.5 year old is named Owen ;)
    Seems like we've done a lot of the same research - would love to compare notes!
    Deena (drs0615@gmail.com)

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  3. I too came across your blog and I just wanted to thank you for sharing your experience. I too have a 4 1/2 week old baby boy with left third degree microtia. Reading your experiences truly brings reassurance that we are not alone and the information you've shared are so much appreciated. I do hope you keep us updated with little Owen's progress. We're from Los Angeles and looking into setting an appointment for consult with Dr. Reinisch. We had our ENT appointment at Children's Hospital in LA and thought that getting second and third opinion is a great idea. Anyway, thank you

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  4. Thank you for this blog! 9 week old Frankie has grade 2 bilateral microtia and I am dying to talk to someone who has been through this.

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