CM/SM child/cervical fusion worsened scoliosis

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CM/SM child/cervical fusion worsened scoliosis

Postby lpepitone » Tue Jan 24, 2012 8:33 am

My 6 year old daughter was decompressed three times by a local neurosurgeon. He removed so much bone that she developed a severe cervical kyphosis. In November, she underwent several grueling surgeries to fuse her down to C6. She is a complete holocord syrinx. Now, just a couple of months later, her scoliosis has worsened drastically and quickly. We have an appointment today with one of her orthopedists to measure and try to see what to do as the scoliosis is moving the halo. Her sides hurt constantly and the she is having headaches that we think are caused by the shift in the pins. We just can't seem to get ahead of these problems!! I barely have recovered from the stress of the fusion and what was best for her CM/SM, and now I have no clue where to start with the scoliosis and what is best for CM/SM/fusion... She can't be braced as the curve is very high and she has a kyphosis as well... We obviously don't have a local neurosurgeon, and I am guessing that if the scoliosis has progressed, as were are fairly sure it has, an MRI will be needed to see about flow. I don't know what else would cause the scoliosis to suddenly go haywire? She has been having a gradually worsening curve, but over 3 years it didn't do as much as the last few months. We liked our team at Cincinnati Childrens, we like our spine doc at New Orleans Childrens. I am now terrified of doctors that claim to know what is best as we found out that is not always true. I know we have to stop the curve, it was already 60, but what if stopping that worsenes yet again something else? So question is, is there a doc out there that knows everything Is VEPTR right for SM/CM kids? What other types of options are out there for SM/CM ?
Lisa Pepitone

(sorry, I posted in the lounge first by mistake)
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Re: CM/SM child/cervical fusion worsened scoliosis

Postby karenb » Tue Jan 24, 2012 2:44 pm

Lisa,

I feel so terrible about the suffering your daughter is going through. Have you posted this message to the Pediatrics message board as well? Some of the folks who are regular users of that board may be able to offer better advice.

I don't have any real answers as to what could be going on, but it does sound like you need to take some action. When was the last time you went back to Cleveland? You might also want to contact one of the Chiari centers/institutes for help.

Karen
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Re: CM/SM child/cervical fusion worsened scoliosis

Postby karenb » Tue Feb 07, 2012 7:58 pm

Hello Lisa,

You hadn't posted any updates in awhile, and I just wanted to touch base and see how things were going for you & your family.

Karen
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Re: CM/SM child/cervical fusion worsened scoliosis

Postby lpepitone » Thu Feb 09, 2012 4:46 pm

Well, Annabelle was really getting her strength and sass back and she kept complaining of a pain in her side, so I took her to see our great ortho in New Orleans... and in his adorable Aussie accent, he said the front of the fusion was healing like gangbusters, but... with my daughter, there always has to be a but!!! A plate had come loose on the back of the skull! So back up to Cincinatti we went. No one is sure why it happened. Last week they operated again and Dr. Crawford again put eveything he could find in the fusion! Matrix, proteins, bone, 6 screws!! You name it! She is recovering - "like gangbusters" - and will get checked in the morning by plastic surgery and her neuro and ortho and then head home!!! The site was so "overoperated" that there were issues with the muscles and the scar tissue, so we added the plastic surgery team :) We needed a few more docs :) Thanks so much for asking about her! She is our world and are just so sad she will now be in the halo 4 more months, miss the entire school year (our private school won't allow her back in the halo), obviously won't lead the life of her twin sister!!
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Re: CM/SM child/cervical fusion worsened scoliosis

Postby lpepitone » Thu Feb 09, 2012 4:50 pm

Oh, I am lost in space, the scoliosis - yes it has worsened but not as much as it seems, they swear it is the halo causing it to worsen slightly, and that the halo makes it look so much worse. THey both assured me it can wait until we get the fusion to a happy place! Dr. King thinks she somehow bruised her ribs and that is causing the pain. It has gotten better, although she does still complain a bit!!
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Re: CM/SM child/cervical fusion worsened scoliosis

Postby karenb » Thu Feb 09, 2012 11:15 pm

Lisa,

I really and truly hope it is an optical illusion. Granted, those can be pretty scary for a child...

Best wishes for a good outcome!

Karen

P.S. Also, best wishes for a good weekend to come!
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