Son diagnosed with Tethered Cord

[JamiRM]

Right before my son's 1st birthday he was diagnosed with Tethered Cord and is scheduled to have corrective surgery this summer at the University of Virginia. They'll be doing a full MRI also, to make sure he doesn't have anything else associated with it. Looking at all of the tethered cord posts, I'm fearful that this condition will cause him lifelong pain, with or without the surgery. Is there anyone out there that either had this surgery themselves when they were a child and are doing well, or have a child who's been thru it and living a "normal" kid's life (playing sports, etc.)? Also, has anyone had any good / bad surgical experiences with Dr. John Jane Jr that they'd like to share?

Thanks.

[Nix2227]

Hello.  I'm new to the site but son is supposed to have surgery for his tethered cord.  Like JamieRM, he is seeing Dr. John Jane Jr.  My little man is 10 1/2 months.  There are no symptoms to date.  We had Urodynamics and an MRI performed last month.  Urodynamics testing show compression around his bladder, but there have been no infections and his kidneys look "perfect."  Moreover, he did not completely empty his bladder during the test, but it was empty when we went in to have the test done.  However, the doctor still recommends surgery based on the Urodynamics and MRI.  

I'm scared to wait because they make it seem like real damage can occur the more time passes.  However, he seems happy and never in any type of pain.  On the other hand, I've been advised there could be some type of spinal fluid leak after the surgery, and most importantly, ALL of the things we are trying to prevent from occurring could happen as a result of the surgery (nerve damage etc.)  

Are there any success stories with Dr. Jane Jr. at UVA.  I'm so scared to let my baby have this surgery.  Any advice or information would be greatly appreciated.

[JamiRM]

Thanks so much for the links, Selma. Any positive info will help tons. I will check them out now.

Jami

[selmaS]

Hi, I also have TC, but mine was not dx'd until I was an adult..so, I have not had the surgery, but I also was dx'd with chiari malformation...and I did have surgery for that. TC  in children can cause issues during growing.....I know all the issues I experienced but was  never given a proper dx.

We do have a chiari forum-http://www.medhelp.org/forums/Chiari-Malformation/show/257?camp=msc
And we have a post from a mom of a little boy that is post op from his TC surgery....http://www.medhelp.org/posts/Chiari-Malformation/Tethered-Cord-Syndrome/show/1255060
U may want to read this  as it is a positive update on his progress.

  "selma"