Upcoming Tethered Spinal Cord Surgery

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

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Upcoming Tethered Spinal Cord Surgery

Postby tchappell » Sun May 02, 2010 2:08 pm

Hello,

Our 4 year old Son is getting ready to undergo Tethered Cord Surgery w/ Dr. Timothy Mapstone in Okc, ok. I am so nervous! Our son was diagnosed w/ Arnold Chiari and along the path of finding that out they also found the Tethered Spinal Cord. He has had alot of problems potty training so that was one of our red flags. I, myself, have arnold chiari and underwent decompression surgery in 2007. Never in a million years would I have thought that my children would have this terrible disorder. I have not had my two daughters MRI done yet to see if that have the chiari. I am so worried about the upcoming surgery. I wonder each day if I am making the right decision to proceed with surgery. There are just so many worries and concerns and emotions. Just wondering if any one had any tips on how to deal with everything or what to expect. Thank you in advance.
tchappell
 
Posts: 20
Joined: Sat Apr 12, 2008 5:16 pm

Re: Upcoming Tethered Spinal Cord Surgery

Postby Becky1219 » Sun May 02, 2010 9:27 pm

My son Jack ( 3 on Tuesday) had TC release last June. He has not been decompressed yet. For him, it was the right decision to have the TC surgery. His bladder was neurogenic and prior to surgery there was no hope for potty training. His first post-op (3 mos) UDS showed his bladder actually seemed worse than prior to surgery, however his UDS 10 mos post-op showed an almost normal bladder. We are getting ready to start potty training!

As far as the surgery itself, everyone has different experiences. For Jack this was his 4th major surgery and by far the fastest and easiest to recover from. The surgery only lasted about 2-2 1/2 hours. He only spent 2 nights in the hospital and recovered quickly. His pain was easy to control, which has not always been the case for him. The hardest part was keeping him laying down once the meds started to wear off. The best thing for this was a Toy Story flashlight with caps that project pictures when you shine the light on the ceiling. We not only entertained Jack, but the kid in the bed next to him who also had spine surgery.

It is hard to sort through your concerns and emotions and to know whether you are making the best decision for your child. I always think about the possiblities for him with the surgery or without. Is there a chance things will get better with surgery? or worse without surgery? So far, our choices have led us in the right direction though it is not usually immediately apparent. We have had questioned are judgement shortly after surgery, to see the end result a few months later be what we were hoping for.

Praying for you and your son!
Becky, wife to Mike, mom to Logan 4/3/04 and Jack 5/4/07 30 weeker EA/TEF, bowel perforation, CM1, SM, TCS, hydrocephalus, metopic synostosis, thin corpus callosum, decreased myelin, and the many issues that go along with these
Becky1219
 
Posts: 24
Joined: Sun Jun 21, 2009 8:59 pm
Location: Indiana

Re: Upcoming Tethered Spinal Cord Surgery

Postby tchappell » Mon May 03, 2010 9:46 am

Thank you so much for your reply...It gives me a little bit of hope and reassurance that I am doing the right thing. I am so worried about the whole potty training thing myself as he is suppose to start Kindergarten in August. I am unsure of how the school system works on something like that, your child not being potty trained and all. Thank you for your kind words and prayers. It so nice to have someone that can actually relate to what we are going through. I truly appreciate you sharing your experience.
tchappell
 
Posts: 20
Joined: Sat Apr 12, 2008 5:16 pm


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