Eliza Update

Eliza's appointment with the orthopedic surgeon was Monday, but I've sort of put off blogging about it. Partially because we left the appointment with our first list of questions answered but a whole new list of questions forming. I hate not having all the answers. When she first got the diagnosis over a month ago I started learning everything I could about infantile scoliosis. I was even reading articles from orthopedic journals on the latest research. If there's one thing I've learned from my job it's that the parents who are the most informed get the best results for their children. So I was determined to be well informed. I was very glad I had done my research.

The doctor we saw was very nice. She was very thorough, took the time to listen to us, explained everything, and answered our questions. She was also knowledgeable of everything I'd learned in my research (which from reading other people's experiences is rare as most of the research has been done in the UK and the principles are sill new or unknown to many doctors here in the US). There was however one measurement, the RVAD, that she was less familiar with. This number essentially will indicate whether the curve will resolve or progress. An RVAD greater than 20 strongly suggests a progressive curve but an RVAD less than 20 suggests a resolving curve. She had only heard of taking this measurement from a standing x-ray (which we obviously don't have for Eliza) but in the research they can do them from an anterior-posterior x-ray. To my amazement she not only heard me out about what I'd read but made a copy of the article, read it, took the measurement on Eliza's x-ray, and then thanked me for educating her more! I'm SO thankful we found a good doctor!

That being said, here is what we learned from the appointment:
- Eliza has a 15 degree C-shaped curve with little to no rotation. Her RVAD was only 8 degrees. (Which is good because her curve is fairly small and not rotated)
- The doctor thinks she has a neuromuscular type of scoliosis. Essentially, her muscles are weak for some reason and that is why her spine is not straight. In this type of scoliosis the RVAD doesn't tell you much about the prognosis of the curve (drat!)
- She also diagnosed Eliza with torticollis (tight neck muscles on one side - again possibly related to some muscle imbalances)

Sorry for the poor quality of the x-ray. It's a picture of the printed copy we have.

The doctor ordered physical therapy to start correcting the torticollis and hopefully helping her gain the strength to straighten up her back. She also wants her to have an ultrasound of her spine to check for a tethered spinal cord. Your spinal cord naturally moves up your spine as you grow but sometimes it can get "tethered" in your lower back/tailbone. This can cause scoliosis (think a shorter piece of elastic inside a longer piece of fabric) and the neuromuscular symptoms. If Eliza's spinal cord is tethered they will have to surgically release it. The doctor was very optimistic though that the curve will straighten up as she gets stronger and specifically once she starts to stand. She also thinks it's unlikely that her spinal cord is tethered because all of her reflexes are testing normally. I sure hope she is right!

So, PT starts this Tuesday and the ultrasound is November 15th. More answers will come with time (but oh man I hate the waiting game). Thankfully Eliza doesn't seem bothered of any of this one bit. She is a very happy, sweet, smiley baby almost all of the time! We love you sweet girl and hope the very best for your little back!

You can see in this picture how she leans slightly to her right side.