Shunt questions

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

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Shunt questions

Postby Lipper5 » Sun Jan 24, 2010 3:07 pm

Just wanted to see if anyone has a child that had to have the syrinx shunted. And wondering how long the recovery was. Did it help? My 3 1/2 year old had decompression surgery two years ago and the syrinx is still as big the day he went into surgery. Stopped growing but didnt shrink. He is now having bowel/bladder problems and we are going to see the NS tomorrow to talk about the next move which is the shunt. Please let me know if anyone can answer a few of my questions.

Krista
Lipper5
 
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Re: Shunt questions

Postby Janice » Sun Jan 24, 2010 3:15 pm

Hi Krista,

I'm so very sorry to hear that your little one is still having problems after PFD. I can't answer your question, however my suggestion is that you read through some of the older posts with the word "shunt" in the title. You'll probably get more feedback this way, as some posters come and go, and some leave after posting only once.

Take care and I hope your child gets better soon.
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Re: Shunt questions

Postby lsobczak » Tue Feb 09, 2010 7:50 pm

Hi Krista, my 6 year old daughter had a syringosubaracnoid shunt placed at T10 for syrinx (T3-L1) in 2007. my daughter was in the ICU for 3 days then a regular room for 3 days then home. she had to lay flat for 3 days to prevent leaking at shunt. i thought this would be hard but most kids are somewhat uncomfortable the first few days so they don't really want to move. on day 5 they got her out of bed and her legs were really shaky and she could not walk. this really scared me because i thought the worst but she was up and going by the time we got her home she was trying to chase her sister around the house. (i guess there is some swelling around the surgical site so this can happen). she had physical therapy for a few months and did well. it has been three years since the surgery and the shunt stopped the progression of the symptoms and syrinx growth. if you have any other questions please let me know because i don't think there are alot of other kids that have to have these shunts placed.
take care
lisa
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Re: Shunt questions

Postby Lipper5 » Wed Feb 10, 2010 11:28 am

Thank you for your reply. Did your daughter have any headaches? Aiden started to complain about short headaches. He would be active and then come and say he had a headache. Two nights he has cried that they hurt bad. I have a call into the dr but waiting to hear what they have to say. Today he has been quiet so no complaint yet.
Lipper5
 
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Re: Shunt questions

Postby lsobczak » Wed Feb 10, 2010 6:19 pm

Yes, the same thing happens to my daughter. When she is active, running around she has to stop after 20-30 minutes because "her head hurts". I have asked the doctors about this but never really get an answer. i was told by other parents (their kids have chiari too) that this happens to their kids and it is from the pressure going up and when the kids slow down and rest it gets better after awhile. it makes sense but i guess i would be hard to confirm because the pressure is not consistantly high. my daughter lies down alot with her head lower than her back and legs. she looks like she is in some sort of yoga position that appears uncomfortable but it gives her relief of discomfort.
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Re: Shunt questions

Postby Lipper5 » Wed Feb 10, 2010 7:49 pm

I called them today again after he got a headache while laying down. I just got concerned and they said it should be ok. As long as he did not throw up or become lethargic. But that they want to see him tomorrow or Friday. I cant believe that this would be a normal thing. I cant believe that your child has this and it is ok. Dont you think this is strange? I am just a mess over this. Aiden had decompression surgery so I think technically he doesnt have Chiari anymore. Could be wrong about this.
Lipper5
 
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Re: Shunt questions

Postby CamsmomKelly » Tue Mar 02, 2010 4:53 pm

Hello,
My son had 2 decompressions surgeries for Chiari/syringo..his syrinx was entire spinal cord and never changed. In June 09 he had syringopleural shunt .He was in the hospital for a week most of time lying flat . He had no feeling on right side following surgery, he still has numbness in right/leg and foot . Last MRI was Nov. 09 syrinx was almost totally gone, he has another MRI tomorrow. My son still has symptoms and damage to spinal cord from his syrinx. IM not trying to scare you because everyones case is different. :)
Kelly
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
CamsmomKelly
 
Posts: 46
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Location: Hazelwood Missouri

Re: Shunt questions

Postby Lipper5 » Tue Mar 02, 2010 8:36 pm

Aiden went for his follow up Monday. Doctor cant believe how he heals. He is doing good except has had some falls in the past couple weeks. If he does fall even if he doesnt hit his head he gets a brief headache. His accidents are starting up again like before. His "dancing" like he has to pee started right up when we tried taking him off of the Detrol LA but we quick put him back on it. As far as the falling NS said it most likely will go away in a couple of months. He said it is like that because of where they have to go into the spinal cord. As far as the accidents he said as long as we can manage with the meds and it doesnt get worse then that is the best we can do. He gets an MRI June 1. He said they want to make sure it either is the same size or smaller and if it is then they will just monitor from here. I hope this is it for Aiden. And I hope our other son will remain the same. His headaches have been popping up again and he is on meds to control them. He goes the same day as Aidens MRI. Kelly, how old is your son?

Krista
Lipper5
 
Posts: 80
Joined: Mon Jan 21, 2008 4:29 pm

Re: Shunt questions

Postby CamsmomKelly » Thu Mar 04, 2010 1:18 am

HI Krista,
It sounds like things are going well. My son has his 3rd MRI today since his surgery last June shunt is still working:). My son is 10yrs old. He had his decompression surgeries when he was 5 & 6 years old. My sons incision is about the middle of his back is your childs too? I was told that the swelling around site could cause the loss of feeling and such too. My son still has numbness on back of right leg and side of his foot. I was told today that it will always be like that. I do feel that the shunt was the right thing to do because he was already showing damage from the syrinx, I was told if we left it alone he would be paralyzed.
Kelly
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
CamsmomKelly
 
Posts: 46
Joined: Wed May 14, 2008 10:30 am
Location: Hazelwood Missouri

Re: Shunt questions

Postby BeThereMom » Sat Mar 13, 2010 8:08 pm

Hi, yes, our 10 yr. old daughter had a permanent shunt placed in her spinal cord to constantly drain her syrinx. 1 week in the hospital and pretty good recovery. We go back March 18th to Duke for her follow up before and after MRIs. Surgery was at Christmas week, went home late Christmas day. She still gets headaches and gets tired out quicker than "normal". Stairs tire her out, we will probably have to move to a one level home soon. Forgot to say she just has the idiopathic syringomyelia. Pain in lower legs and feet happen at any time with no pattern except when physically overdoing. Hope this helps.
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
 
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Location: Asheville, NC


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