LET'S START AT THE BEGINNING

The reason we decided to share information this way is because Sydney does not necessarily want to spend a lot of time talking about this and she was concerned about how to let people know without actually having to tell them.  We thought this would be a great way to keep everyone up to date with what is going on.  It will also help me to remember all of the details that I will surely forget when this is all behind us.

Sometime in the middle of 2011 Sydney complained of her back hurting while she sat and practiced piano. I took her to the chiropractor with me on my next visit, he looked at her back and told me she had scoliosis. He recommended that we make an appointment with her primary doctor, which we did. Her doctor confirmed the scoliosis diagnosis and referred us to an orthopedic surgeon at Rady's Children's Hospital. We had to wait two months for the appointment despite my frequent calls to see if we could get in any sooner.
We had our appointment on September 21, 2011. At that time they took an x-ray of Syd's back and told us that she had a double curve with a thoracic curve of 34 degrees and a lumbar curve of 39 degrees. We were told that she could wear a brace to try and prevent the progression of the curves but the doctor said there was about a 50/50 chance of it helping. She was not a candidate for surgery at that time because her curves had not yet approached 50 degrees. Neither Syd nor I got a great feeling from this doctor and definitely felt like he threw this information at us and that was it. He didn't explain much to us and I personally didn't think he handled Sydney very well considering she was 11 at the time and he had just delivered some pretty scary news. He is probably a wonderful doctor and surgeon -- just not our style. We saw the x-ray for the first time also and it was a little shocking. He ordered an MRI so that they could have a better look at her spine.

We scheduled the MRI, Sydney got fitted for the brace and I began searching for someone to give us a second opinion. That's when I found our current doctor (Dr. N) who is the head of the scoliosis department at Children's. I made the soonest appointment I could and we saw him in December. In the mean time, Sydney went and got a full spine MRI. She did remarkably well considering she had to lay in the small tube for 45 minutes and not move (or talk!). They allowed me to be in the room with her and she was able to watch a movie through special goggles they gave her, although the machine was so loud she said she couldn't hear the movie anyway.

After the MRI we received a call from the doctor saying that they saw something that concerned them and wanted us to go see the neurologist. We made that appointment and I continued to remind myself to take deep breaths. :) In November we met with the neurologist who thankfully said that he saw nothing to be concerned about and that Sydney had a beautiful spinal cord. Exhale.

In between all of this I am trying to find the balance of doing enough research to be somewhat educated about what is going on with my daughter and yet not reading too much because the internet can be a scary place when you google certain things.

When we finally met with Dr. N in December he discussed scoliosis with us more thoroughly and explained what we were seeing on the xray. He discussed our options, which were few. We could do the wait and see method or Sydney could decide to wear the brace. We met him on a Friday and the following Monday we were scheduled to go pick up the brace. Dr. N was even less encouraging about the brace then the first doctor indicating that there is no hard evidence that wearing the brace actually stops the progression of the curve. Many people spend years in the brace and then end up having to have corrective surgery anyway. He gave us a very low percentage chance that it would do any good. For some it helps and for some it doesn't and nobody knows why. I felt as if it was being offered as a way to make us feel like we could try something. Based on our discussion, Sydney had pretty much decided not to wear the brace. I told her that I still wanted her to go and get it on Monday since she had already been fitted for it and it was there waiting for her. She did not even want to see the thing but I wanted her to see it, try it on and make an informed decision before dismissing the idea all together. We went on Monday and picked up the brace. I'll tell you it is very large and bulky and Sydney had a hard time relaxing while she had it on which made it very difficult for her to move. This confirmed her decision that the odds would have to be much more in her favor in order for her to wear the brace. By the way, she would have had to wear it for at least 20 hours a day.

Once that decision was made, we were in the wait and see what happens mode. We had a follow up appointment scheduled with Dr. N in March 2012 to have a new x-ray taken. It was six months after the initial x-ray back in September. Sydney continued to do well with her back as far as having no pain or discomfort. Physically, it is most notable when she leans over to touch her toes. Not only is her spine crooked but her ribs have rotated slightly which causes the upper right side of her back to protrude and the lower left side to be a bit concave. One hip is a little higher than the other and one shoulder as well. Despite having a rather large curve in her spine, I believe if you saw her you would never even know she had scoliosis unless you really looked for it. During this time we joined the YMCA and she began to take swim lessons. We were looking for some form of exercise that would be good for and easy on her back.

On March 8, 2012 we went for the follow-up appointment. Another x-ray was taken and the news was not so good. Her curves had increased significantly in the six months since her prior x-ray. They are now at 41 degrees (thoracic) and 49 degrees (lumbar). The doctor says she needs surgery. He says she still has a lot of growing to do and her curves are most likely going to continue to get larger and larger. So that's where we are. There are not a lot of options here. The only proven way to stop the progression is surgery. The good news is that the surgery will do a lot to straighten out the curve that is already there. Her spine will not be completely straight but much straighter than it is now. It's a major surgery and not what any of us wanted but we don't get a say in that do we?



We happen to think she is perfect, inside and out.