Tethered cord

[sacha_stephanie]

Thanks so much for responding. Yes, the MRI will also be checking for a tethered spinal cord. He suggested that we have the MRI but I foolishly asked that we wait until March for the testing as I was nervous, and didnt realize that if it was tethered, they could fix the problem immediately. I was worried about having to put Hunter under anesthesia.
The orthopedic surgeon is the best in our area. (Ottawa, Ontario) My brother was also born with scoliosis and a heart defect, was treated by him almost 20 years ago.
I was wondering if anyone knows if Hunter did have any abnormalities of the heart or kidneys, would there be any symptoms, or would I not be able to know until the MRI and ultrasounds are done?
Thanks so much for all the information. We'll keep in touch, I'll write back soon.

[jbossert]

Stephanie - Welcome!! I am the father of Jimmy. Jimmy has Spina Bifida. We found out about it 10 weeks before his birth. Four hours after his birth, he was put under general anesthetic and his spinal defect was "repaired". Soon after, we discovered that he had an underdeveloped left kidney and severe reflux on both kidneys. We went on a program of clean-intermittent-catheterization (5x per day) and antibiotics. When he was 3, he inderwent an endoscopic procedure to repair the defective valves that were causing the kidney reflux. Not long after, we were able to discontinue the cath'ing, and he now goes potty just like other 5 year-old boys. :-)

Jimmy also has scoliosis. At 4 months of age, we noticed a slight hump on his back. X-rays indicated that the curve was at 24-degrees. His condition was monitored for several more months. The curve progressed to 40+ degrees. An MRI indicated a "Fatty Filum". Basically, this means that the "tail" of the spinal cord was tethered. Jimmy underwent an operation at 8 months of age to release his Fatty Filum. Unfortunately, a follow-up MRI showed that he was still tethered at his defect location. At 9 months of age, he inderwent an operation to release the tether. It was successful!!

Jimmy's curve maintained in the 40's. At 15 months of age, he got his first TLSO. He has been in many braces since then (23 hours per day). His curve has slowly dropped to it's current state of 33 degrees. He gets x-rays every 4 months or so to monitor the curve. The current plan is to continue to brace him until one of two things happen. 1) The curve worsens significantly 2) He reaches "skeletal maturity". At that point, he will most-likely undergo a fusion of some sort.

Jimmy's medical history would tend to make someone think that he is disabled in some way. Quite the contrary, he functions like every other healthy child his age. His brace is concealed under his clothing (although he has been known to show the entire class during "show and tell"). We've taken the "don't be afraid to tell people about it" approach. So far, it has worked wonderfully.

Well, I have thrown a lot at you. We have LOTS of experience with Scoliosis and everything that goes along with it. Please feel free to contact me via this board (or via email at jbosse@acxiom.com) if you would like to discuss any questions that you may have.

Take Care,


Jim Bossert (Proud father of Jimmy Jr...5 years, Lipomyelomeningocele, defect repair 6/98 (at 4 hours old), Fatty Filum release (3/99), TC release (4/99), bi-lateral kidney reflux repair (12/00), underdeveloped left kidney, severe scoliosis, full-time TLSO)