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

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Postby corynsmommie » Mon Aug 06, 2007 8:15 pm

Hi, my name is Laura and my daughter Coryn has syringomyelia. She was diagnosed at birth and had her first ultrasound on her spine when she was less that 48 hours old. I was told that they didnt know how this would affect her and to treat her as a normal healthy baby. At 4 months old she had an MRI and her neuorologist infomed me that coryn has a very rare kind of this disorded. Her cyst is located at the base of her spine as opposed to the upper region. I again was told the same thing and that we should have follow ups with the doctor every couple of months.
Coryn is now 14 months old and has been walking and climbing for 5 months now. I was very happy with how she was developing. Then I took her to her neuoroligist about a week ago and she is not as thrilled as I am. She said her reflexes are "brisk" and although shes walking, the way her legs move tell her somethings not right. We now need a new MRI and a visit to the neuorosurgen. I dont really know what to expect and havent been able to find any research regarding the type of syringomyelia that she has. If anyone knows anything that will be informative or would just like to talk, please write me
corynsmommie
 

Postby angie7 » Mon Aug 06, 2007 8:40 pm

First, I am sorry to hear about your dd. Why did they look for it at birth? was something wrong?

As far as having a "rare" type of SM, all of it is rare and SM is just SM. There really arent different types, just different locations w/ special names. But did he give you a specific name? I am curious since your dd's is at the base of her spine, has anyone looked for tethered cord syndrome or TCS? This happens sometimes in children and one of the first clues is a very low syrinx like your dd's. SM is caused by something, idiopathic SM (meaning no cause) is about 1% so chances are there is a reason for your dd's syrinx....

I am not sure where you are located but I strongly recommened you find a SM specialist to help you with your journey. This disease is rare and needs the best care you can get. I know Dr Frim in Chicago is a great ped specialist. You can also find a list on the home page of this site under the "medical advisory board" I see Dr Oro in Colorado, I live in Indiana. Many of us have to travel far and wide for help but it is truly worth it to meet a true expert in the field of SM...

ETA: In your original post you mentioned the word "cyst" SM isnt really a cyst but more cystic like, most like to call it a lesion in their spinal cord since technically it really isnt a cyst at all....
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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Postby brianfsmom » Tue Aug 07, 2007 5:34 am

Hi, and welcome.

My first thought in reading your post was the same as Angie's - perhaps a tethered spinal cord. Sometimes, as I understand it, this won't even show up on MRI. If they recommend surgery to shunt the syrinx, I would take her to someone with experience with chiari and tethered cord before going ahead. If there is a root cause for the syrinx that should be treated first. Usually this would be a chiari malformation (I assume they have definitely ruled that out? Although the herniation can lengthen as a child gets older. so it may be there and just not be evident yet)

Second, my son had the rapid reflexes as well, when he was 9. This is one of the things that tipped off the neurologist that there was a problem. He had chiari decompression surgery and still has a syrinx, although it shrunk a bit. His is mainly in the thoracic spine, with a small thin one in the lower cervical spine. They really can be anywhere.

The surgery restored his reflexes despite the lingering syrinx. The neurologist now says he thinks that was more from crowding at the foramen magnum (back of the head) than from the syrinx.

Good luck with your daughter! Hopefully they will just watch her for a while as she continues to grow.
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