DS follow up MRI results not what we were hoping for. HELP!

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

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DS follow up MRI results not what we were hoping for. HELP!

Postby Gina217 » Fri Dec 31, 2010 7:01 am

My 11 year old son, Michael, had decompression surgery May 13, 2010. His cerebellar tonsils descended 16mm prior to surgery. He just had his first post-surgery MRI on Tuesday, December 28, 2010 and it showed that although there is no crowding, he still descends 7-8mm. Our ns appointment is on January 4th, but I was wondering if anyone has experience with this outcome, if you could let me know what your ns told you. Let me also say that Michael has not had any symptoms for the past 3 months. He is now in physical therapy because his left foot has turned out and they are also working on his balance issues. Please let me know what I can expect to hear at our upcoming appointment. Thank you!
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Re: DS follow up MRI results not what we were hoping for. HELP!

Postby medicpt » Sat Jan 01, 2011 3:09 pm

I am sorry to say that I don't really have words that can "help" you per se. I can only say in some aspects I am going through this too. My dtr Elise, had her surgery on 9/30 and we have her 3 month f/u on 1/4/11 as well. She is doing well, but I don't know as yet if she still has cerebellar tonsil herniation. Symptomatically, she seems good.

I pray that your son's balance issues resolve and that there is not impact with this continued tonsillar herniation.

Blessings, Wendi2
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Re: DS follow up MRI results not what we were hoping for. HELP!

Postby hvilletwins » Wed Jan 05, 2011 2:17 pm

My daughter Lauren was decompressed at 4 months old. She is 7 now and still has herniation of ~20mm. She is doing really well and doesn't have an abnormal number of headaches. She sees Dr. Fuchs at Duke every year for MRIs, and he has never been concerned due to her lack of symptoms. Hope this is encouraging!!
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Re: DS follow up MRI results not what we were hoping for. HELP!

Postby medicpt » Wed Jan 05, 2011 8:01 pm

Just wondering, How did you appointment go? I pray it went well yesterday.

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Re: DS follow up MRI results not what we were hoping for. HELP!

Postby arnajett » Sat Apr 09, 2011 9:39 pm

My 15 yr old had 25 mm distension.had decompression without duraplasty in nov 2010. He had follow up MRI last month and it showed his chiari was still there. Ns stated we wanted to c change in his syrinx. No change. His headaches r gone but now he has constant back pain. I believe that as long as velocity and pressure in brain is better that they will always have chiari but they want to c change in pressures. It's all overwhelming!
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