Dreading What Can’t Happen Soon Enough: Our Scoliosis Journey

Dreading it while just wanting it to be over. That’s how life has been since June. That’s when we learned Bella has idiopathic scoliosis. That she needs treatment. We decided on Vertebral Body Tethering  (VBT) and a November surgery date was set. Now, here we are.

It’s all becoming very real this week. It started with an extensive MRI. Bella did great, her biggest complaint, it was boring. She’s amazing.

The next day, more x-rays, measurements, a meeting with a research team, blood draws and instructions on how to prepare for surgery. Four and half hours at the Children’s Hospital of Philadelphia. No complaints from Bella. She continues to be amazing. When we got home there was a sweet treat on our doorstep, from friends. We have so much support from our community.

We’ve been lucky in this scoliosis journey. Bella has a friend who had the VBT procedure two years and one day before Bella’s surgery date. She’s a tall, beautiful girl whose spine is straightening. She tells Bella what to expect from a perspective none of us have.

What is VBT?

We’ve chosen VBT over bracing and possibly a spinal fusion. Zimmer Biomet, the company that produces the hardware for the procedure describes it this way:

“Historically, if bracing didn’t work, the only other option was spinal fusion. A spinal fusion involves implanting metal rods along either side of your spine to straighten your curve. Rather than metal rods, The Tether uses a strong, flexible cord to straighten out the spine. Spinal fusion is still a great option for patients with scoliosis, but Vertebral Body Tethering may be preferred depending on your lifestyle choices. Patients who find it is important to maintain motion of their spine may choose Vertebral Body Tethering.” Learn more about The Tether by clicking here.

Bella has agreed to be part of a research study to evaluate the treatment of idiopathic scoliosis for all different kinds of curves of the spine.  Researchers hope to create a database of patients who are being observed or surgically treated for scoliosis at 12 medical facilities across the country. The hope is it will allow surgeons to provide better outcomes for patients.

The research assistants took more measurements and photos of Bella’s back and torso. She didn’t mind. She’s excited to be part of it. Just as treatment has become more advanced since my diagnosis in 1983, if Bella should pass it on to her daughter someday, the treatments will be even more advanced. Bella’s case might play a little part in the development of new techniques and procedures. We think that’s pretty cool.

We have a few days now to enjoy the fall weather and Halloween. Monday we’ll get up really early and head to CHOP. We’re so fortunate to be so close to world class healthcare. And we’re thankful that it’s almost done.

To be continued…….

Dreading it while just wanting it to be over"

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