The following is a draft of my I-Search paper for this semester. I want to be able to keep a running record of what goes on in this search, so I'm blogging it. It seems like the internet has become almost omnipresent, so why not keep my draft as part of the blog?
What I Knew-
I knew what scoliosis was before I found out my daughter has it. I understood that it was a lateral curvature of the spine. I also knew that it could be serious, and it could be a disfiguring disease.
When I was younger, I had a friend that had to have an operation on her spine to straighten it out by implanting a metal rod. She was in a full body cast for about a year. I know that she was in pain, and she really suffered while she was in the cast. When she got older, I remember seeing the scar that went all the way up and down her spine, and I always felt bad about it. She never really complained about it, however.
I began finding out more about scoliosis before I started doing my search. I found out that some people have bad cases, and others have a mild form of the disease. I was told that some people have surgery, and others are able to mitigate the problem with physical therapy. Scoliosis tends to affect women much more than men, and typically it comes on when they are in their teens. I also found out that as much as 10% of the female population 13-25 has some curvature of the spine, and they used to screen for it at middle schools and high schools.
Why I’m Writing This Paper-
It makes me sad to have to do this search, because it involves the health of my daughter. At the same time, it is important that I know as much as I can about scoliosis. I want to make sure that she has the best care possible, and that we are doing everything we can to correct the structural problem in her spine.
This will be a hard search to do, because I have always had an idealized vision of what Rachel will become as she grows up. I know this is not a good thing for a parent to do, because it can change the relationship you have with your child. Too frequently parents spend a lot of energy shaping the lives of their children in the image that they prefer. I believe that every person is given a life to live, and it is up to that person to determine how she or he will live it.
That said, she is big, strong, athletic, and somewhat competitive. I have always thought of her as the kind of child that will be on athletic teams, and may one day achieve at a high level athletically. I don't know if scoliosis will limit her physically or not. I can't help but be concerned about it, even as I watch her run, swing, play in the yard, and compete athletically. Her favorite things to do are play physically, and play music. I don't want to see her limited in either one of those areas.
My goal is to find out as much as possible about scoliosis, the progression of the condition, and how it is best treated. I plan on visiting multiple doctors, and reading extensively. I hope that a thorough search will yield positive results that may prove beneficial for Rachel.
The Search-
My search really began at the office of the physical therapist. His name is Tim, and he works out of West Michigan Orthopedics. Our pediatrician had referred Rachel (my oldest daughter) to the physcial therapist. Tim is a very upbeat, positive person. He was engaging and informative while he was working with Rachel. He seemed to feel that it was quite possible that physical therapy could help her overcome the problem she has with her back.
Next week (March 28-April 1) is going to be a good one for this search. Rachel has another appointment with Tim, the physical therapist, on Wednesday. She also has an appointment with Dr. Michael Forness at DeVos Children's Hospital in Grand Rapids. He is a specialist in pediatric scoliosis. I wanted to interview this guy, but I'm not going to be able to get to that appointment. So I'm sending my wife with my questions instead. I'm really interested in hearing what he has to say. I will be able to go to the appointment with Tim after school on Wednesday, however. I have some questions for him, too.
I have noticed that Rachel has begun to build up muscle tissue on the right side of her spine since she has been doing the exercises that Tim has prescribed. This is good, because there was a large bulge of muscle on the left side of her spine that may have created the situation that caused the curvature in her spine. The exercises are once a day during the week and twice a day on weekends. They take about 20-25 minutes to complete. It has been a difficult to maintain the schedule, because Rachel has a very busy schedule of extracurriculars.
Wednesday and Thursday passed this week, and we found out a few more things from the physical therapist and the doctor. Tim said that he thought Rachel was making excellent progress, that her muscle tone was improving, and her flexibility was still not what he wanted to see, but it was getting better. He gave her a couple of new exercises to do, and we set another appointment for about three weeks, later in April. I’m not sure Tim knows a lot about the prognosis of her disease, because he seemed to think that it could be reversed, or improved, which Susan found out on Thursday, is apparently not the case.
Susan took Rachel out of school on Thursday to see Dr. Michael Forness in Grand Rapids, at DeVos children’s hospital. He is supposed to be an expert in pediatric orthopedics, one of the best doctors in our area to see about scliosis for kids. Unfortunately, he was not brimming over with good news.
“Some people have crooked teeth, some people have crooked backs,” was what Susan repeated to me over the phone. This was her direct quote of Dr. Forness. I was curious, because I know plenty of dentists that can fix crooked teeth. Apparently that is not the case with Scoliosis. According to Dr. Forness, once you have the curvature in your spine, there is no going back, it’s curved, period. I was quite surprised to hear that this is permanent condition, because I thought surgery corrected it, and I also thought that we were going to physical therapy to correct it. So I was a little alarmed to hear this bad news. He also said that the Scoliosis is not related to my Ankylosing Spondylitis, which has been causing stiffness in my back since I was aobut 20 years old.
They felt that her X-ray from Holland Hospital was not accurate enough, so they took another set of more definitive X-rays. Again, it was more bad news. When he measured the angle of the curvature in her spine, it was measured at 24 degrees, not the 18 that was measured by the previous X-ray. He said that this is not yet enough to be considered a medical risk, but if it got to 30 degrees, it would be. At 50 degrees, they must consider surgery, because the internal organs can be threatened at that point. They also consider using a brace to stop the curvature of the spine at 30 degrees.
None of this made me feel better. Although I had more information about Rachel’s condition, none of it was promising. Also, our pediatrician had described what she thought was a 5 degree curvature, which turned out to be almost 20 degrees short of the mark. And 24 degrees is halfway to surgery!
I was quite annoyed that I didn’t get to go to the appointment with Dr. Forness. I wanted to get a feel for this guy and see if seemed like he knew what he was talking about. I’m quite unsatisfied with the basic diagnosis, which is she has to live with it, just like someone would live with crooked teeth. He wants to monitor the progress of the disease, and have another look at her in 4 months. I’m more interested in doing something about the condition immediately. It’s very hard for me to accept that a 9 year-old girl has a permanent curvature in her spine. Nothing should be permanent for a 9 year-old girl! The world changes, her body will change, everything changes, and sometimes for the better. Why not the scoliosis? It seems like there ought to be some possibility for improvement for Rachel’s condition. I’m thinking about a 3rd opinion from a doctor now. I still need to read some more about the disease, so next time, I can ask better questions of the doctor.
What I Learned-
One of the first, and most shocking, things I learned about scoliosis is the fact that the condition is not reversible. The spine begins to twist or curve, and it will not go back to the original straight condition. This was really surprising to me, because I had assumed that if the spine curved in one direction, it made sense to me that you could make the spine curve back with some kind of therapy.
Apparently, that’s not how it works. Dr. explained it in a very cavalier way by saying “some people have crooked teeth, and some people have crooked backs. Your daughter has a crooked back.” This was upsetting to me, but he apparently didn’t find it very far out of the ordinary.
One of the next things I learned was that there are only a few treatment options. One of the options is to do nothing! For patients that have less than a 30 degree curvature of the spine, the treatment is to take a new xray every few months and keep an eye on the progression of the curvature. If it remains static, then they just hope that it won’t get worse.
The second option is to get a hard plastic brace that is worn over the patient’s torso. The patient has to wear the brace for 23+ hours a day! The goal of the brace is to keep the spine from curving more, but it has no corrective value, because, according to the doctors, the curvature cannot be reversed. I remembered my friend from middle school wearing a brace, and I knew she hated it. It was cumbersome, and it made her very self-conscious. It’s a non-surgical option which is good, but it also has some disadvantages. It is noticeable under clothes, and wearing it constantly can be a bit painful.
The last option is to have surgery. It is called spinal fusion surgery and involves fusing the spinal vertebrae together to stop the increase of curvature. The spine is exposed, the vertebrae are scraped to promote regrowth, and then metal rods and wires are used to create stability in the portion of the spine that is curved.
Sources of Information-
Robinson, Richard. Scoliosis. The Gale Encyclopedia of Medicine. Gale Research, 1999.
Smith, Tim. Personal Interview. March 16, 2005.
Forness, Michael. Personal Interview. March 31, 2005.
