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Author: Subject: 34/female - Looking for an expert this time around!
Rikki
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[*] posted on 1-11-2017 at 03:18 PM
34/female - Looking for an expert this time around!


I have PE and had surgery to attempt to correct the deformity at UCSF in 2015. My pre-op haller index was 5.5. Post-op index is approx 4 and possibly receding. There may be a screw that is loose in one of the plates they used (!)

I am going to have surgery again since some symptoms have returned and there is still compression on my heart. The symptom that I worry about most is that I pass out about once or twice a year for no reason. I have passed out once since my surgery and some of my circulation issues are returning.

My surgeon at UCSF, who is no longer there, had a difficult time with my surgery. It was planned to be a Nuss but the bar kept flipping back before he could secure it. He ended up doing a modified Ravitch.

This time around my doctor tried to refer me to Dr. J but my insurance denied the request. I was in the process of appealing when Dr. J's office told me that, as of 2017, they are no longer seeing patients with a prior Ravitch repair. I am at a loss right now. I think my only in-network option is Dr. Mark Berry at Stanford. Does anyone have experience with him?
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[*] posted on 1-13-2017 at 06:01 AM


That news about Dr. J is also news to me.

I have been in the process of trying to get a revision with her team for the past 5 years, fighting through red tape and the bureaucracy of health care in this country.

Why would she suddenly stop accepting these patients? Was there any reasoning?
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Rikki
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[*] posted on 1-13-2017 at 08:50 AM


I guess it's a brand new policy for them. I was working with them last month and even registered but, like you, I was fighting with my insurance company to try and get it approved.

Her assistant Kelly told me that they have more patients than they can accept. So, they are having to reduce the patients that they see. I'm not sure why they decided not to accept folks with a prior Ravitch. Seems to me like, if you need revision surgery, you might be in a particularly bad spot and would need an expert :(
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[*] posted on 1-18-2017 at 03:46 PM


you may send your pictures to me, for a first assessment here in Berlin -Buch, Germany

we are the European reference centre for Chest deformities and do redos after Ravitch regularlay usually a Nuss or Nuss-hybrid

out of our 1680 Nuss repairs her in Berlin -Buch

close to 10 % were redos after 1-8 previous operations
( a bit more redos after Ravitch than Nuss)

morover the Dollar is strong presently

Prof. Dr. Dr.med. Klaus Schaarschmidt
Director of Helios Center for Pediatric and Adolescent Surgery
klaus.schaarschmidt@helios-kliniken.de
Tel.: +49 30 9401-54400
Fax: +49 30 9401-54409




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Friskyseal
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[*] posted on 1-18-2017 at 11:55 PM


Rikki,

Wow, that is big news actually. Dr. J was performing some highly technical and experimental redos of failed Ravitches--the only one in the US in fact. In her published papers, she admitted that the durability of the repairs was completely unknown. If she is refusing to do them now, that must mean the results have not been good. That is sad to hear and disappointing. If anyone in the future can obtain more information about this (hopefully from Dr. J directly), please share!

That leaves the only option being Schaar. I can vouch for him. I know it might seem baffling at first, but you might have no other choice than to go outside the country and pay cash. It is very important that you are in the best hands.
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Rikki
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[*] posted on 1-31-2017 at 10:11 AM


Thank you, Dr. Schaarschmidt! I appreciate your willingness to see me. Unfortunately, I am not in a position to pay cash or travel outside of the country. In 2 weeks I am going to see a surgeon at Stanford, Dr. Mark Berry, who does the Ravitch procedure for a possible redo. Hopefully he will be able to successfully repair my pectus.

Friskyseal: This is what Dr. J's assistant told me:
Due to higher demand for the Pectus Program, than the capacity allows, we are unable to accept patients who have had prior open pectus repair surgery at this time. We can provide you the following information for locating other providers who work with prior open pectus repairs:

IU Health Methodist Professional Center (Indianapolis, IN)
317-963-1400

Cleveland Clinic
866-289-6911

Children's Hospital of the King's Daughters (Norfolk, VA)
757-668-7703

UCLA
310-206-2429

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