Standard Follow-up Care Post Surgery

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Standard Follow-up Care Post Surgery

Postby cari » Wed Mar 30, 2011 1:06 pm

My 5 yr old daughter had decompression surgery w/ duraplasty in August 2010 for Chiari and Syringomyelia. She has had two follow-up MRI's. At the last MRI a few weeks ago, the NS indicated that the syrnix was almost completely resolved and said that we did not need to return for any follow-up appointments, or future MRI's. I was a little surprised by this and even repeated it to him to be sure I understood. He advised us to keep a careful watch for scoliosis and any of the known Chiari/SM symptoms.
Is this the post-op care most of you have seen? Our prior NS indicated that my daughter would require annual MRI's until adulthood and then maybe an MRI every few years.
I have left a message for our NS to discuss this, but wanted to get some feedback on what the norm is.
I really appreciate any input! Thank you.
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Re: Standard Follow-up Care Post Surgery

Postby medicpt » Thu Mar 31, 2011 4:34 pm

I have this concern as well, My dtr had her decompression on 9/30/10 and we do have a f/u in aug, but the NS kinda indicated that her post op MRI was fine, and that he probably would not order another one. My concern is during these growing years, shouldn't we be monitoring this? She just turned 4 this month, and at times she has some strange complaints.... so naturally, I worry.

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Location: Pennsylvania

Re: Standard Follow-up Care Post Surgery

Postby 3kidssane » Fri Apr 08, 2011 6:46 am

Our NS said that while our daughter was growing she should have an MRI once a year, unless problems arise.
Mother of: DD,8 with Cm 1 protruding tonsils 10mm and SM with Syrinx from t5-t7, 4 mm in depth and 5 mm in width, DC'd 2x 6/2010, DS, 4 with enviromental allergies, food allergies and autism,DS 2, DS 5 months.
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Re: Standard Follow-up Care Post Surgery

Postby cari » Fri Apr 08, 2011 9:14 am

Thanks for the info-I talked w/ our NS and explained to him that I was really apprehensive about the long term prognosis. He was very understanding and suggested an MRI every year. That makes me feel a lot better, however, he also said he is retiring in the next year. I guess the search will be on for a new NS.
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