We Survived Scoliosis and Spinal Fusion Surgery!

I didn't notice that Amanda had developed scoliosis - her teacher did. The first time I was aware of it was when her teacher sent home a seemingly innocent note,"Has Amanda's scoliosis gotten worse?" She was six years old.

I don't know why I didn't see it myself. After all, I bathed her and dressed her every day. I guess that it happened so gradually that I couldn't see it. At first I was irritated. I didn't want something so serious to happen to her. However, I did the right thing and got a referral to an orthopedic doctor.

Look how high her right shoulder is. I don't see how I didn't notice at the time.

Sitting in that appointment I felt like a bucket of cold water was dumped over my head. I was almost in shock. Not only did Amanda have scoliosis, she had severe scoliosis - her back curved more than 50 degrees. She has hypotonia (low muscle tone) and tends to favor her right side. That meant that she developed stronger muscles on the right side of her body, from head to toe. Her dominant right side was actually twisting her body. She had to be molded for a body cast immediately to prevent her spine from crushing her heart and left lung.

Being molded for the brace was tough. She didn't want to lay still. I tried to hold my crying, screaming child down while a technician wrapped her body in casting material. Finally we had to have two more men come in to help hold her down. I heard the orthotist mutter,"low tone my ass," under his breath. Oddly, instead of offending me it added a moment of levity to a very stressful situation.

The completed back brace extended from above her collar bone to just below her hip bones. It opened like a clam shell to fit her body then strapped shut with a series of velcro closures. The goal was for Amanda to wear the back brace 16-20 hours a day.  That meant sleeping it in - which turned out to be impossible. She has never been a good sleeper and expecting her to sleep when she couldn't move or roll over was unrealistic. The low point came in the summer of 2005 when she was in the back brace and had both legs in casts following leg surgery.

Unfortunately, after more than a year of wearing the brace 10-12 hours a day her curvature worsened. It had increased to 68 degrees and there was an added torque as she apparently twisted somehow inside the brace while it was on. So in 2006 --when I was 6 months pregnant with Danielle-- Amanda had her first spinal surgery.

It was her third surgery that year and the most serious.The plan was to insert "growing rods" along her spine.  When bracing doesn't work, very young children with progressive scoliosis can be helped by inserting metal rods to support the spine. The rods are surgically elongated about every six months to allow them to continue to grow. The plan was to keep the rods in until she reached puberty and then remove them and do a complete spinal fusion.

The initial procedure took more than 5 hours.  She remained at the Children's Health Care of Atlanta Scottish Rite facility for 5 days.  One of us stayed at the hospital with her every minute of the day. Since Amanda can't talk she wouldn't have been able to tell the nurses if she was in pain or needed something. She couldn't even push the call button on her own.

After that there was an 6 week recovery where she needed to be relatively still, although fortunately not bedridden.  We bought her a recliner and let her watch a lot of TV.

hospital 2006

Six months later, when she was 8, Amanda went in for the first lengthening of the growing rods. The procedure was much quicker (only a few hours) and the surgeon was pleased that he had been able to extend the rods almost a full inch.

Tragically, there was never a second lengthening procedure. Later that Spring Amanda came home from "water day" at school. Her teacher had written a short note that she had fallen, but wasn't hurt. I looked at Amanda and immediately saw that one of her front teeth was broken. I called her dentist and got an emergency appointment to have it repaired that afternoon. When I was changing her into a clean shirt for the dentist I noticed a bump on the back right side of her shoulder. A few days later that bump had swollen up several inches.

We took her to the orthopedic surgeon for x-rays.  It turned out that the fall had broken one end of the growing rods right out of her bone. Extending the growing rods was no longer an option. At only 8-1/2 years old Amanda had to undergo a complete spinal fusion.

In spinal fusion for scoliosis, rods and screws are attached to the curved part of the backbone and the spine is straightened. Small pieces of bone are then put over the spine. The bone pieces grow together with the spinal bone, fusing it into the proper position.

at home post fusion 2007

Amanda's spinal fusion took seven hours to complete. When I first saw her after the surgery she looked like a different child. Her face was horribly swollen from laying on her stomach for so many hours during the surgery. Even her eyes were bulging. She was on oxygen and hooked up to an IV. She remained in the Intensive Care Unit for several days before being released from the hospital.

This recovery was much harder than the previous back surgeries. She was clearly in pain. She needed to remain in the back brace for the first few weeks while the bones knit. We had to be extremely careful moving her. When she was sitting up it was in her recliner or in a reclining wheelchair.

However, Amanda is a trooper. She has a high tolerance for pain and is amazingly resiliant. Within weeks she was out of the brace and more or less back to normal. She returned to school in the fall of 2007 with explicit written instructions that she be guarded at all times to prevent future falls.