Scar tissue question

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

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Scar tissue question

Postby BeThereMom » Tue Oct 19, 2010 8:15 pm

My 11 yr. old girl had a permanent shunt put in T5-T7 to constantly drain her very large syrinx last December- 2009. All healed well, pain, numbness went miraculously away and then came crashing back 5 months later. Back into the hospital she went for many tests that could not explain her pain in her legs and back. No nerve or muscle medicine helped. Tests showed the shunt was working fine. She has non trauma related SM and not CM. After all of this since the pain started in May the docs have said it must be in her head and we are just left with a daughter in constant pain. So......my question is could this be scar tissue causing her pain and what if anything can we do about it?
Cindy
Mom of 11yr. old daughter, Elaina
idiopathic syringomyelia, large syrinx at t5-t7
permanent shunt since 12-22-09
My girl is one tough cookie, people believe her smile through the pain.
BeThereMom
 
Posts: 17
Joined: Thu Oct 08, 2009 7:51 pm
Location: Asheville, NC

Re: Scar tissue question

Postby harris2215 » Sat Oct 23, 2010 10:39 am

Cindy,

I am assuming on the MRI that they didn't find a tethered cord causing the syrinx. When they did do the shunt, what happened to the syrinx? Does the syrinx get smaller, go away? We are in the process of getting 2 more opinions since our daughter's syrinx has grown and I would recommend getting another pair of eyes for your daughter as well.
Christine
Kinsley 5yrs old- VACTERL, TCS release 10/2008, SM- C3- L3 -7.8mm. wide at T12, and Congential Scolosis T8-T9 fused.
harris2215
 
Posts: 6
Joined: Fri Oct 15, 2010 5:09 pm

Re: Scar tissue question

Postby BeThereMom » Sun Oct 24, 2010 7:19 pm

Christine,
Thank you for responding. You assumed right that she doesn't have a tethered cord. Her syrinx collapsed when they put in the shunt. I am finding another ped. neurologist to hopefully find out what is going on. Wish you and your family well.

Cindy
Cindy
Mom of 11yr. old daughter, Elaina
idiopathic syringomyelia, large syrinx at t5-t7
permanent shunt since 12-22-09
My girl is one tough cookie, people believe her smile through the pain.
BeThereMom
 
Posts: 17
Joined: Thu Oct 08, 2009 7:51 pm
Location: Asheville, NC

Re: Scar tissue question

Postby lcolangelo » Mon Oct 25, 2010 12:07 pm

did the doctor do an MRI with cine flow study? My daughter did not have a syrnix-- she has a cm-- after her decompression she re-grew bone as well as scar tissue and it blocked off csf flow-- which caused pain in her head, arms and legs. -don't know if this would apply to you--hope she is feeling better- there is nothing worse than seeing your children in pain. Good luck.
LIsa
lcolangelo
 
Posts: 77
Joined: Fri Mar 21, 2008 1:50 pm

Re: Scar tissue question

Postby BeThereMom » Mon Oct 25, 2010 6:38 pm

Lisa,
Thank you for the info, all I know that she's had is the MRIs, not sure if she had a cine flow study, not heard of that, I would hope they would have told me if they did. Waiting to find out if this local ped. NL has experience with this and if not, I have asked him to let me know of one that does if he can't help us. I will go anywhere. Best wished to your family too.
Cindy
Mom of 11yr. old daughter, Elaina
idiopathic syringomyelia, large syrinx at t5-t7
permanent shunt since 12-22-09
My girl is one tough cookie, people believe her smile through the pain.
BeThereMom
 
Posts: 17
Joined: Thu Oct 08, 2009 7:51 pm
Location: Asheville, NC


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