growing rods

[lin515]

My daughter Amanda is twelve years old, she will be having a posterior spinal fusion on February 22, she currently presents with a 53 degrees thoracic and a 35 degree lumbar curve. Bracing was never an option for her as she has osteoporosis and my Doc was concerned about possible bone fractures. He will be inserting growing rods as she is currently a risser 0, with a bone age of 9, no menstruation, weighs only 61 lbs. and is 4 feet 6 inches tall. She will return every 6 months to adjust the screws as she grows. She is currently being treated with growth hormones so with alot of growing left to do and an increasingly aggresive curve my doctor feels this is our only option. When growing is near complete he will do the surgery with permanent rods. Has anyone had experiences with this surgery. I Feel like I got a double whammy here and this was not the outcome I was hoping for. Any help is greatly appreciated.

Many thanks,
Linda

[Carmell]

Hi Linda,

I can understand how hard of a decision this is to make for you and Amanda. Having osteoporosis only complicates this decision.

I'm glad your ortho is not suggesting immediate fusion, since her body has much growth potential. She's not a typical 12yr old facing surgery for scoliosis.

Have you gotten more than one opinion for her? I would hope that your ortho has MUCH experience treating children with similar conditions. The fact that her bones are more brittle than most make a huge difference in the type of device they should recommend. My biggest concern with the growing rods is how invasive they are with the existing bone structure. She's already compromised. Having more invasion of the bones in the spine may not be an ideal situation. Are her curves balanced? Are they progressing at a rapid rate? If she's not progressing quickly, what is the hurry in needing surgery sooner than later? Are her lungs being affected by the curves? Does she have breathing issues?

If you send me a message and remind me where you live, I can suggest an ortho who has experience in dealing with kids like Amanda. Take care!

[lin515]

Carmell,

Thank you so much for writing. I got your pm and hope your son is feeling much better. My doctor is very aware of Amandas osteoporosis, He is actually the one who diagnosed it and then sent us for a bone density test which confirmed his findings. He had originally suggested the newer less invasive surgery which Amanda would have been a candidate for the name of the surgery escapes me at the moment its the one where they enter through the sides, but since the osteo diagnosis he can no longer perform that one, stapling is also out. I am currently seeing Dr. Baron Lonner of Scoliosis associates in Manhattan. He was our 2nd opinion and we have been with him now for several years. Amandas curve progressed from 43 degrees in July to 53 degrees 2 weeks ago with only a 1/2 inch of growth and with the growth hormones coming into play he feels it is better done sooner then later. He was never in a hurry to push us into surgery so I am comfortable with his recommendation. Amandas breathing is not compromised in any way. She has some back pain but nothing to drastic at this time. We will be taking her in this week for some bending xrays to check flexibility and I am startting to gather some more questions, it seems that you think you have asked them all and then you go home and 1000 more pop into your head.

Many Thanks,
Linda