Did I say this was only about scoliosis?

We had a good week in Wisconsin and I guess we were ready to be back home. We were maybe 3 hours from home, somewhere in Ohio, east of Fort Wayne and west of Upper Sandusky. We were coming up on a slow moving vehicle so Duane pulled over into the left lane to pass. We then smelled something burning. He was able to pull around the slow moving vehicle and get off on to the shoulder. I opened my door and leaned out. The front right tire was flat.

After unloading the trunk to get to the spare and the jack, Duane got the tire off and discovered that there was a hole blown on the inside sidewall of the tire.

He got the tire changed and we repacked the car--the kids were packed in the back seat with quite a bit from the trunk and I had a crock pot under my feet. It was a long rest of the trip because Duane could drive only 55 mph on the donut tire.

Beer, Cheese, and Jelly Belly

Being the medical person that I am, I started wondering what is involved in scoliosis surgery. The day after we got the news about Allie being a surgical candidate, I started web surfing. Not a good idea at 6 in the morning after not getting very much sleep. However, while I was skimming a web page, there were ads interspersed regarding a method of treatment called Schroth physical therapy. I was intrigued.

So far we had learned that no one seems to know much about what causes scoliosis in a normally healthy child. In America there are only 3 approaches to treatment--observation, bracing, and surgery. "There is no scientific evidence that chiropractic or physical therapy does anything in the treatment of scoliosis." Frankly, I find this to be unacceptable.

I started reading through these links about Schroth and found out that it is a method of physical therapy developed in Europe by a woman who had scoliosis herself and wanted exercises to help treat the condition. This method of treatment is not accepted in the U.S. and is really in its infancy of being used here--meaning there are very few places that offer this therapy. After reading through the information I was greatly encouraged that this could possibly help us avoid surgery. I talked with Duane and Allie and we were all in agreement that it would be worth a try. I chose Spinal Dynamics of Wisconsin located near Milwaukee as the place we would try (http://www.sdwpt.com/about-us/our-history.php).

I called and we were put in touch with Meg Gogin, MPT and certified in Schroth Rehabilitation. I sent Meg the records and we had a phone interview. Because of living so far away, we would need to spend a week in Milwaukee so that Allie could go through immersion therapy. The last week of September 2011 we headed to Milwaukee.

The first half of the first day was spent with Meg getting to know us, observing and testing Allie, and then educating us. We learned that Allie is very strong. We also learned that not only does her spine move out to the side, but there is also a rotational component. As her spine curves out it also rotates inward. This rotation is what contributes to her shoulders and pelvic bone being uneven. Meg quizzed us often throughout the week on this because the Schroth exercises are dependent on understanding how the curve is shaped.



This is from the first day. Meg had Allie stand in front of this grid and she took pictures front, back, side and bending over so that we could get a good look at her overall posture and know what direction to go with the exercises. You can see how the rotation of her spine affects the placement of her feet--her right foot is slightly behind her left because the right side of her pelvic bone rotates back.

Next we learned about pelvic corrections. There were 5 steps that Allie needed to do in order to bring her pelvic bone back into a more normal alignment. The pelvice corrections include: lean forward, tuck the pelvic bone under, rotate the right side forward, shift to the right, the balance everything equally on both feet. Then we learned about the Schroth exercises. Using an exercise ladder, poles, small pads, and a yoga belt, Meg taught Allie the different Schroth positions that would help stretch, strengthen and retrain her muscles and hopefully prevent her from needing surgery. It was a tough week, but we were so proud of Allie. She put everything she had into learning those exercises and was exhausted by the end of the week.

 

 This is from Friday. Allie had been through a full week of training. Once again, Meg had Allie stand in front of the grid and she did the same series of photos, first without doing the corrections and then doing the corrections. This picture is before corrections. You can see that she looks much more balanced and her feet are even.

 

 

 This is after the pelvic corrections. You can see that she is now even more balanced, more stretched/taller, and her right hip isn't as prominent.

 

 

So, what does this have to do with beer, cheese and Jelly Belly? Well, we were in Milwaukee. We did have some free time and toured a local brewery (Sprecher's) and tasted ROOT BEER. While Allie and I were at physical therapy, Duane and Will were out and about and one of their stops was at the Miller brewery. If we had any cheese, it would have been a cheeseburger at Culver's. On our way home, we stopped for a tour of Jelly Belly.

The Hairpin Turn

Up until July 2011 we were under the impression that Allie's curves were such that they did not need to be braced. We had been told that bracing would happen if her curves went over 30 degrees. At her January 2011 check-up, we were assured there was no need for a brace. I honestly can't remember if the doctor told us what the curves were measuring. In June 2010, her top curve (thoracic) was at 22 degrees and the lower curve (thoracolumbar) was at 19--per the orthopedic's measurements.

In July 2011 her curves measured 39 degrees (thoracic or top curve) and 47 degrees (thoracolumbar or bottom curve). The new orthopedic doctor says that she was now at the top end of where bracing would be effective and that she was now considered a surgical candidate. He said that because of her recent growth and the rapid increase in the curve, Allie needed to have and MRI to make sure there was nothing neurologically causing the rapid increase. Thankfully, the MRI was essentially clean--just a small spot that may need to be monitored in the future. We moved forward with the thought that surgery would still be at least 2 years away.


This is the July 2011 x-ray and you are viewing it as if you are looking at Allie's back. A couple of things I would like to point out. First, looking at her shoulders you can see that her left shoulder is just slightly lower than her right. The left side of her rib cage is flattened on the outside and the ribs sit closer together. The left side of her pelvic bone is higher than her right. These are details that I did not pick up on until late September.

Lisa

And the road begins to curve...

Allie was diagnosed with scoliosis in 2007 when she was 8 years old and a baseline x-ray was done. At that point it was very minimal. In 2008, the pediatrician didn't think much of it and no further work-up was done. The road curved in 2009. We were sent for another x-ray and then referral to an orthopedic surgeon.

This x-ray is from June 2009. This is what you would see looking at Allie from the front. You can sort of see a small curve going to the left side of the picture (her right) just above the heart. Just below the heart, you can see the other curve going to her left side. Because the curves were so "small" nothing was done at that time. We were told throughout 2010 to early 2011 that the curves were "stable" and she didn't need to be braced. 

We found out in July 2011, just before the next routine check-up, that the orthopedic surgeon had moved from Columbus and we were scheduled in with a new one. At that visit we were asked our perspective on the course of treatment up to that point. We were not prepared for what came next.