Syringomyelia and Scoliosis

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

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Syringomyelia and Scoliosis

Postby veryconcerned » Fri Apr 11, 2008 10:17 am

Hello Everyone,
My daughter was diagnosed at age 12 w/ idiopathic scoliosis, 9 degrees. Eighteen months later, her curve was 18 degrees, she had mild, intermittent thoracic pain and an absent abdominal reflex. This prompted an order for a full spine MRI with contrast, which reflected a small thoracic syrinx, and an additional smaller cervical syrinx. We have seen the ordering ortho. doc as well as a neurosurgeon in follow-up. I feel like we got somewhat conflicting advice from them.
She is now classified as neuromuscular scoliosis as opposed to idiopathic. The MRI reading quoted a 21 degree curve, so bracing for that was discussed. She does have headaches regularly, since age 5.
She does not have chiari or tethered cord and has never had a spinal injury. I am not finding much information out there about syringomyelia that is not secondary to those two scenarios. There is also not much data out there about bracing for scoliosis and syringomyelia. Could anyone point me in the direction of an EXPERT on syringomyelia who is on the east coast? We live in NJ and are willing to travel to get the BEST advice on how to proceed. I am extremely concerned. Any advice is appreciated and any insight from someone with experience in this particular sort of situation would be so helpful. Thank you to all.
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Postby Sara » Fri Apr 11, 2008 4:24 pm

There are alot of dr on the East coast. You might want to be re-evaluated for Chiari- sometimes a borderline case is missed. Usually there is a cause, but it is sometimes hard to find.
here are a just a few nsg that come to mind:
Dr Jerry Oakes, U of AL
Dr Peter Carmel New Jersey
Dr Benjamin Carson John Hopkins
The Chiari Institute is located in NY

Hope and Holly's mom
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Postby pattip448 » Fri Apr 11, 2008 8:01 pm

On Dr. Oro's Blog site "Chiari Times" he has a section with medical references for CM and related disorders such as sm and scoliosis Here is a link you may find informative ... d_RVDocSum ... ssue%206(1)/Scoliosis%20CM%20SM%206(1).asp

Hope this helps
Patti , (EDS), Mom of 16 yr old with TC and EDS 6.6mm cerebellar herniation, 15 yr old with EDS Hypermobile
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Location: Calgary,Canada

Postby angie7 » Fri Apr 11, 2008 9:29 pm

Scoliosis seems to be common among SMer's but I'm not sure I would label it the cause of a syrinx. My scoliosis was 50ish degrees before my decompression surgery, in my lumbar region and my syrinx is in my cervical spine. After I had my surgery, my scoliosis corrected itself back to about 10 degrees, my syrinx remains the same. I would have her checked out by a specialist to rule out possible CM or another cause.

Dr Frim is in Chicago and Dr Menezes in Iowa. They are leading experts for peds. If either of my kids had it, I would see either of these 2 without hesitation.
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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Re: Syringomyelia and Scoliosis

Postby drummergrl » Wed Apr 16, 2008 6:48 pm

I'm about 3 months post op from my spinal fusion for scoliosis caused by my SM. We knew the scoli diagnosis for 8 years before we found out the CM/SM diagnosis. I was braced in so many different braces (Milwaukee, TLSO, Providence, etc) before I knew that it was neuromuscular, not idiopathic. After I had my CM decompression, the hope was that my scoli would stop progressing and stay at 40 degrees, but about a year later I was at 50 degrees and I had the fusion in January. I just went back to my neurosurgeon a few weeks ago and found out that my CM and SM are as "fixed" as they're going to get (which isn't opportune, but definitely manageable) and my spine is fused from T-3 to L-4. So, I guess to sum up this post :) I'm just saying that "happy endings" can come from this whole ordeal... both my "conditions" are very stable, and I'm almost back to being "normal" again. Good luck in the next few months, and let me know if you have any questions!!!
CM, SM, Scoliosis
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Re: Syringomyelia and Scoliosis

Postby KyliesSis » Mon Apr 21, 2008 9:35 pm

Hey there,

My sister has scoliosis (very mild) and syringomyelia, (two cysts located at the cervical and thoracic area). < That was the doctor's initial diagnosis, but then we went and saw Dr. Frim in Chicago and he mentioned Tethered Cord. I have read before (In fact it was a member that gave me the links; but the links somehow disappeared) that sometimes an MRI does not show that someone has Tethered Cord. I believe the condition is Occult Tethered Cord. When Dr. Frim explained, he said that the conditions may be related. Meaning that the Spina Bifida that she has caused the Tethered Cord, which probably led to her SM and Scoliosis. Hope this helps, and if you have any questions, feel free to PM me.

Good luck,
Proud Sister of 6 year old Kylie
SM C3-C4 and T10-T11
Tethered Cord Syndrome
Spina Bifida
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