Total Spine Syringomyelia - Possible??

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

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Total Spine Syringomyelia - Possible??

Postby amfritcher » Mon May 24, 2010 6:03 pm

My 15 year old dd has been having back pain and pains down one leg since Dec. 09. She plays on a nat'l travel vball team and after the season was over which was early this month we took her to a sport ortho dr to see if there was something going on with her back...they ordered initial MRI that show no fracture or disk problems but showed extra fluid, so they ordered a total spine MRI last week and called last Friday and said she had Syringomyelia and fluid the total length of her spine, and that we needed to see a Pediatric Neurosurgeon....we are waiting to hear back from Dr. Bradley Weprin at Childrens-Dallas. We are totally shocked and weren't expecting anything like this.

Could they be wrong in there reading of the MRI's...and is it possible to have that the whole length of her spine. Also, nothing Advil, Alieve, ES Tylenol...helps with her back pain and the sharp pain down her left leg..Does this sound familiar to any of you??? We are all new to this so any info would be greatly appreciated cause I'm trying not to freak out about this...all she ask is will I be good for when Varsity 2-Adays starts in August and travel ball season...

Also, what are the chances that this is a tumor causing this?


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Re: Total Spine Syringomyelia - Possible??

Postby razzle » Tue May 25, 2010 4:43 am

Dr. Richard Jackson is tops in Dallas . And yes it can be whole lenght of the spine. There is no surgery to be done unless her spinal fluid is blocked. R
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
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Re: Total Spine Syringomyelia - Possible??

Postby emarismom » Thu May 27, 2010 6:08 am

My daughter's syryngomyelia was initially c2-T11, almost entire spine. She had no
pain. Only symptom was scoliosis.
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Re: Total Spine Syringomyelia - Possible??

Postby momintexas » Thu May 27, 2010 11:20 am

My daughter's pediatric neurosurgeon is Dr. Dale Swift, and he is in the same group with Dr. Weprin. Their group is the only pediatric neurosurgeons in the Dallas area. They were wonderful and your dd will be in good hands with them. Everything they do is discussed as a team. They are very thorough. I can't say enough great things about them (except it took a while to finally get in to be seen initially!).

Prayers for you and your daughter. I hope that you get the answers you need!
Mom to 9 yr old Madison - 19mm CMI diagonosed 2/2009
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Re: Total Spine Syringomyelia - Possible??

Postby Sara » Fri May 28, 2010 3:03 pm

It can certainly be the length of the spine, this is called a holocord syrinx. First thing is to find the cause, in most cases this is a Chairi malformation. Other causes do include tethered cord or tumors, these are less common causes. Did they use contrast (dye)? You will need to see a ped neurosurgeon to help determine the cause and decide what needs to be done. Request a free info packet from ASAP if you haven't already. ... free-info/
A great source of information which is available for purchase is the conference e-notebook which you can download and begin reading right away.

Hang in there!
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Re: Total Spine Syringomyelia - Possible??

Postby SamuelsMom » Fri May 28, 2010 7:21 pm

Just wanted to welcome you. You have received some good advice. I'm glad to see she is going to an expert. Keep us posted on what the NS says also keep asking questions. My son 9 has a syrinx--why I'm here. On a side note, I played college volleyball, point I know how important volleyball is....I just wanted to acknowledge her concern. It something you will want to talk about with the NS. Hopefully,finding the cause will give you some direction.
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Re: Total Spine Syringomyelia - Possible??

Postby CamsmomKelly » Tue Jun 22, 2010 3:02 pm

My son was diagnosed with Holocord when he was 4, had two chiari decompressions , which didnt change his syrinx any, at 10yrs old in June 09 had syringoplerual shunt placed and syrinx has deflated. :)
mom of Cameren 11 yrs. old
Chiari,retroflex odontoid,syringomyelia,scoliosis
Chiari decompressions 6/2005,5/2006
Syringopleural shunt 6/2009
Boston Braced off & on 6.5yrs
scliosis surgery- soon
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