Scoliosis - the early days

We took A back to her doctor yesterday. We were scheduled to go in May, however, we have noticed significant change over the past few months, so we were able to get in earlier.

Both of her curves have progressed a great deal. Her major curve went from 69 degrees last February to 84 degrees now. Her compensatory curve, which is the one in her lower back, has also increased, but that is really because her body is still trying to keep everything in line. Her lower curve is in the 40s now.

This really was not a surprise since we had watched how she has changed. What was a surpise was the course of treatment he is now recommending.

Up until now, the best course of action was going to be go in and try to remove some bad vertebrae, fuse the area that is curving and place rods in her spine. This obviously would be a permanent procedure.

He is now recommending another option, which would be to place a device in her called a "titanium rib". It is also called a VEPTR, which stands for Vertical Expandable Prosthetic Titanium Rib.

The VEPTR is a fairly new thing, only approved by the FDA in 2004. It is used to expand the rib cage to allow the lungs adequate room to grow. That is really the main concern for Abigail, that because of the way her spine is rotating and curving, there will be stress placed on the lungs.

There are only a handful of doctors in the country that are approved, or have used it. Our doctor has done two of these procedure (not sure if they were at Baptist or not), and has 3 in line ahead of A.

There are pros and cons with the new option. The main pro is that there is not a significant risk with the surgery, as with the other option. They really will not be near the spine if they use the VEPTR. There are minor risks, but just the basics that come with every surgery.

The cons are that it is not a "one surgery and we're done". The VEPTR has to be expanded every 6 months, basically for the next 10 or so years, until her trunk is done growing. So we are looking at potentially 20 or more surgeries just for expansion. Who knows what that means as far as insurance goes. I have the feeling that she will reach a lifetime max fairly quickly.

So we probably have more questions than answers at this point. I just wanted to give you all an update on where we're at right now.

If we go the VEPTR route, then he would like to do the surgery w/in 6 to 12 months. We are thinking fall of this year. He is still forming his team that will be doing these procedures with him, and it sounds like it is more entailed because of the newness of the procedure.