The first denial I can remember. I can’t remember when my friends started mentioning the curve. From what I can find 49% of people with Spina Bifida will have scoliosis and 43% will have surgery to correct this. I’m sure the higher the level of injury, the higher the percentage of scoliosis. The first mention of scoliosis had to be around 5th or 6th grade. When had it started? Again, this was not something I was looking for and thus I was ignoring or unconsciously denying its existence. At that time, my child was “normal” or I was able to pretend she was. Therapy had all but stopped, doctor visits were rare, school was going well (As, Bs and Cs.) Math was her difficult area, but she was passing. She was active, had a best friend and appeared so typical in her own way.
March of Mel’s 7th grade year, all the pretending the curve did not matter came to a halt. She got a pressure sore. That was the start of many difficulties.
We had gone to the clinic about her curve earlier. I can not recall when that visit was; maybe a year before the first pressure sore. The Doctor looked at her back and basically said. “What do you expect, she has Spina Bifida” I really, really dislike that kind of answer. He indicated we could do surgery but he did not recommend it. It would give Mel about three to 4four inches of height. It would make it impossible for her to bend her back. She would have trouble and have to relearn to do many things without bending her back. The recovery period was about 6 months. He indicated if Mel really wanted the surgery, he would consider it but he saw no benefit. I informed the doctor I did not want to wait until the surgery could not be done before doing it. He told me that the surgery was recommended when the curve got to a point that Mel had to use her hands to balance, was impacting her breathing or causing other medical problems. We left with a recommendation to come back in twelve months for a recheck. I felt his tone was one that said “Do not bother to come back until one of the above mentioned problem occurred” I thought about a second opinion, however, ignoring the problem was easier. Or maybe it was not the time to address this new obstacle. Mel was one hundred percent certain she was not going to have surgery.
You see, Mel was doing so well, I was able to push all thoughts of problems aside. No doctors meant or equaled no problems. I was coasting.
I did not want the therapy to restart, the doctor visits to restart. Middle school was a time that I was just able to pretend Mel was like any other kid.
Looking back, I do not think that my lack of action caused any problems for Mel. We did try physical therapy. They recommended home exercises. I truly do not think the exercises would have really slowed the progression of the curve. I’m at least hoping and I will never know as we did not do them. Mel had a life to lead. Mel was starting to direct her own care. It is hard to make a middle school kid do a home program when you are not 100% sure it will make a difference. I could not get her to make her bed or keep her cloths in the hamper. I had tried, believe me I had tried but you can only fight so many battles. Doing home therapy was not going to be one of the battle I wanted to fight. So many other things seemed more important.
Decide what you want, decide what you are willing to exchange for it. Establish you prioritize and get to work -H.L. Hunt
Today, Mel is a junior in High School and still has a curve. It has gotten worse but she still does not need to use her hands when sitting. She still has no known breathing problems. She has had more pressure sores. She is thinking about surgery, the summer after she gets out of high school. I’ll have to let you know. At this point, she is driving her medical care. I’m in the back seat, making sure I approve of her decisions but I figure in two years, she will be in control so I might as well let her practice now.