PDA

View Full Version : Fusion or growth rods for a 10 yo



nojobro
03-23-2009, 11:44 AM
Hi,

I have been a member here for a long time but haven't posted in a few years. My daughter, Bronwen, will be 10 in less than two weeks. She's had scoliosis since she was 18 months old. She wore a brace full time for a long time, then there was a period where her curves reduced down below 20 and she didn't wear a brace, then they started creeping back up and we did vertebral body stapling. That we had to do twice, once in May 2007 (age 8) and again in March 2008 (age almost 9) (both at the Philadelphia Shriners Hospital). In March last year, the curves were both about 35. She has a lumbar curve, and a compensatory thoracic curve. Initially the correction was under 20 for each curve.

We saw her doctor (Dr. Sturm at Shriners Chicago) last week, and her curves have been creeping up again. Right now the lumbar is at 43 and the thoracic is at 40. So now we have moved on to discussing some type of fusion, because we expect the curves to keep increasing. He said we can pick between a regular fusion and growth rods. He also said that at age 10, 90% of spinal growth is done. I don't want to put her through many more surgeries (she has had 9 surgeries already; she has had other problems besides scoliosis: hip dysplasia and an umbilical hernia) but I don't want to stunt her growth any more than we have to.

I am wondering if her spine might possibly be stabilizing in the low 40s. Well, I suppose I am hoping. ;-) Last November, her curves measured 35 L and 20 T, but now they are closer together at 43 and 40.

Anyway, does anyone have experience with a fusion or growth rods in a 10-year old? What should we ask the doctor about? Any other options out there? We go back mid-June.

In case there is confusion about the hospitals above: we live not far from Chicago and have been going to the Shriners there since Bronwen was 3. When we wanted the stapling done, Dr. Sturm didn't do it yet. So, we traveled to Philadelphia for it. She had the first one with Dr. D'Andrea and the second one with Dr. Asghar, both under the oversight of Dr. Betz. Dr. Sturm was going to assist on the first surgery but at the last minute could not, but did assist on the second and is now trained to do the surgery. He also replaced a staple that came dislodged, in May 2008. That we did in Chicago.

The reason the stapling had to be done twice is that Dr. D'Andrea only stapled the lumbar curve, because she thought there was too much kyphosis on the thoracic curve (kyphosis is a contraindication for stapling). The next year it was clear it was not working and so we hoped that by also stapling the upper curve, it would work better. There was no kyphosis at that time, according to Dr. Asghar.

Thanks,

Nola

Carmell
03-23-2009, 12:07 PM
Hi Nola,

You already know my opinion on this topic, so I won't bother you with it again. Just wanted to say that I hope you find peace in the decisions you make. Not easy, I know. You'll do great. You have great surgeons on Bronwen's "team". It also doesn't help that this takes time. You want to make the decision NOW and be done. With scoliosis, a quick decision is often the wrong decision. There is time to research and find the BEST decision, including the best timing of the treatment, whichever you choose.

Take care!

tonibunny
03-23-2009, 12:12 PM
Hi Nola,

I had my spine fused from T1-T12 when I was ten years old, correcting a 76 degree curve to 45 degrees (this was in 1986, when the instrumentation wasn't as effective as it is these days). I also had a 50 degree lumbar curve but they left off fusing this one until I was 18. I'm now fused T1-L3 with a residual double curve of 45/35 degrees.

Despite all of this my torso didn't end up noticeably shorter than it should have been. I myself can tell that it's slightly short, because I have to adjust straps on dresses and tops (they're always too long!), but no-one else has EVER noticed. Rather than looking like I have a short torso, I look like I have long legs :D

Good luck with whatever you decide for your daughter,

Toni xx