My adventures with Physical Therapy and Scoliosis

Hey everyone, I’m sorry that this article is a few days late. I don’t quite have a set schedule for publishing posts, but I’ll try to be more consistent from now on. For today, I’m going to answer Fritz’s questions.

For starters, I didn’t just have physical therapy after surgery, I actually had it before, too. I tried a few different types while I was bracing. The first one began shortly after I got my Spinecor brace, and the therapy was based on the brace.  We traveled two hours to University of Michigan hospital to work with a qualified Physical Therapist. This was about 8 or so years ago, so I can’t remember any of it. Personally, I was not a big fan of the Spinecor brace, but I’m not sure if that feeling was the same with the therapy.
After I switched to the Rigo Cheneau brace, I traveled to Wisconsin for a week long session of Schroth therapy at the Scoliosis Rehab. The therapists were worried that I was too young, and that the therapy would be too difficult. When I talked to my mom about this, she says that some of the techniques were pretty difficult for me. The one thing I remember is the reward system. I can’t remember if it was daily or after I completed an exercise, but it’s the thing that stands out the most. The reward was a fake tattoo. I remember being so excited to get one of those things, and I think that definitely helped motivate me. It turns out that those exercises were too hard for me, because I stopped doing them shortly after I got home.
Next came the ScoliSmart therapy. This is one that I kept doing until just before my surgery. There were things that I liked and didn’t like about this therapy, but overall it was pretty effective. It helped to slow the grow of my curve for as long as possible. One thing hat I didn’t like about this therapy was the adjustments. Every time we visited the office, the doctor would do some adjustments on our (my mom, brother, and I) backs. I’m not quite sure why I didn’t like these, and I don’t know how they work either. I just remember them being uncomfortable. This is my personal opinion, though. My mom loved the adjustments.
A few months before my surgery, I had two therapy sessions at University of Michigan, where I was given back strengthening exercises. At this point I was out of my brace, so the doctors were trying to strengthen my back and shoulder muscles before the big day. These were mostly stretching and involved a lot of exercises with bands. These didn’t bother me, and they probably helped me get over the discomfort I was feeling because of my newfound lack of support after being braced for so many years.
The only therapy that I’ve done after my surgery was during my four days in the hospital. For the therapy, I had to practice walking around the hospital and climbing stairs. I had a strong dislike for these. It was probably just because I was under the influence of a few different drugs, I just wanted to sleep, and walking made me nauseous. I don’t remember very much during my time at the hospital because I was taking a lot of medicine. To leave the hospital, I had to walk a certain distance and climb a few stairs. I completed these, but not without lots of complaining.
I think that a reward system might be good for certain kids doing physical therapy. This motivates, and helps them push past whatever discomfort they might be feeling. This was the case for me, at least. I hope I answered your question. Remember, if any of you have questions, make sure to leave a comment!
See you next week!

Sports with Scoliosis

Hey everyone!

Today, I am going to do my best to answer Jackie Umstead’s question.

One of the first questions I had for my doctor when I found out I was going to need surgery was this: Will I still be able to do sports? Her answer was yes. I play basketball, volleyball, and I lift weights. A lot of these can be extremely beneficial to those with scoliosis. For instance, if you do it correctly, lifting weights can help strengthen your back muscles. Since I wore a brace for so long, my back and shoulder muscles were weak because I didn’t use them much. Now that I’ve started weight lifting again, I can definitely feel a difference. My dad, who also has scoliosis (he never got treatment), says that weight lifting helps a lot with back pain. Another helpful thing to do is stretch. I know that my hamstrings are always tight, and this can sometimes cause tightness in my back. Even though I don’t stretch very often, I should. My doctor recommended daily stretching for me, and I’ve seen other websites that support this as well. Don’t push yourself too hard, though. If you do too much too soon, you could pull a muscle. It’s not fun having a pulled muscle; I speak from experience.

If you are pre-surgery, a lot of doctors recommend swimming because it helps strengthen the spinal muscles in a weightless environment. If you are post-surgery, the first thing you should do is consult your doctor. After searching around a bit, I found that most competitive swimmers go back to swimming after either six months or a year. Their ability to do certain strokes or flips depends on the person and the level of curvature they had. It is also dependent on which part of the spine was curved. Some people can’t do flip turns or the butterfly stroke, others can.

Some sports you have to be careful with, though. Some people don’t recommend long distance running, because it can be very jarring. Sports like gymnastics, tennis, and anything that is one-sided or causes you to twist a lot can be harmful. A lot of these sports are dependent on your type of curve. I can’t do gymnastics because I physically can’t twist around, and I had to stop a few years after I got diagnosed. All of the twisting and bending was worsening my curve.

Always ask your doctor about sports before trying them. I am not an expert, but I dug up as much as I could. If  see anything else on growing rods and swimming, I will be sure to post an update.

Good luck, and see you next week!

P.S.- Here are some websites and blogs that I found.

Sports and Exercise if you have scoliosis…

Scoliosis and Sports

Click to access BCCH1689_TheGrowingSpine_2015.pdf

Life After Surgery

Hey guys! I just wanted to thank everyone for all of the positive feedback, and for all of your questions. Today, I’m going to be replying to Steve Wainess.

When I first got out of surgery, I was in the hospital for four days. I was asleep for most of that time, and only got up if someone made me. I also didn’t eat very much, and lost around ten pounds during those four days. I had to stay a day or two longer than another spinal fusion patient nearby, because my curve was more advanced than hers. There are many different factors that could influence how long you are in the hospital, so don’t worry if you are in the hospital for a different amount of time. While I was in the hospital, I had to practice walking a lot, which I hated. First, I was walking with assistance. A day or two before I left the hospital, I could walk on my own, but I still had someone next to me.

After I got out of the hospital, I was usually in bed or sitting somewhere comfortable; I only moved when necessary. This went on for about two weeks. My ability to move slowly increased, but I got tired really easily.

My restrictions were slowly removed each time I went to the doctor’s office. Four months after my surgery (I think), I was cleared to run. My mom tells me that I was so elated that I sprinted out of the doctor’s office as soon as I got the ‘ok’. At the six month mark, in June, I had all of my restrictions removed. I only had one complication during surgery. While the doctors were operating, the sensors on the left side of my body were not responding. Because of this, the doctors couldn’t get as much correction done as they wanted, and they had to use more hooks. When I got out of surgery, my left thigh was numb, but it has faded over time. It feels completely normal now. (Mom’s input: the Doctors lost signal to her left leg during surgery while performing the first of 3 osteotomies that they wanted to perform.  Because her curve was so severe (97 degrees), Dr.Li wanted to do the osteotomies (shaving of bone) to get the curve straighter.  Because she lost signal to the left side during the first one, she did not finish the others.  Therefore, we only got a correction to 40 degrees.  The loss of signal could have been from a loose connection, but it was good that they played it safe).

Now, there are very few things that I can’t do. I can’t bend backwards very far or twist from side-to-side, but that’s pretty much it. My back and shoulders surrounding my scar are still partially numb, even after a few years later. Don’t worry, this is normal. I also sometimes get little nerve pinches in my shoulder blade area, but that’s nothing to worry about as well. Of course, if you have any concerns, you can ask your doctor when your surgery date gets closer.

One of the questions I got was this: What is the most important thing to know about spinal fusion surgery? I had to think for quite a while on this one, but I hope my response answers your questions.

It is going to be difficult, and most likely uncomfortable too for a while. I’m not going to sugarcoat this. I know, you’ve probably heard that it’s going to be hard, but hearing it and experiencing it aren’t the same thing. You might get nervous, frustrated, or scared. I went through all of these things, too. As I was in the final hour before my surgery, I was terrified. It’s scary not knowing what’s going to happen next, and realizing you have no control over it is worse. Know this: your family and team of doctors will be there for you and protect you. They will make sure you’re alright. I had so much support from my family and friends, it was overwhelming.

My days in the hospital were extremely uncomfortable, but the doctors always made sure that I was never in pain. While I was recovering, it was extremely frustrating to not be able to do everything you could before. Things like showering and even walking are difficult for the first few weeks, and that can be hard to deal with. Just know that it gets better, that you will get better, and that you will be back to normal in no time at all. Also, I don’t regret getting surgery for one second, because everything was worth it in the end. I feel so much better, so much more alive, now that I have fully recovered. It will be difficult, but you will be so much better off when it’s all said and done.

Remember, if you have any questions, simply ask! See you next week!


Summer Blog Takeover

Hey guys! My name is Cindy, and I’m taking over the blog for the summer. (Maybe longer, we’ll see.) I’m 14 years old, and I’m super excited to be on the blogging team, which pretty much consists of my mom and I. If you haven’t guessed already, I’m the daughter of Tina, the creator of this blog.

Many of you have probably read about my scoliosis story on this blog, but I’m going to share the short version with you anyway. When I was six, I was diagnosed with scoliosis. The doctor said that I had approximately a 25 degree curve. The doctors advised us to wait six months, and so we did. Six months later, we return to the doctor and find that my curve had gotten much worse. (I can’t remember many details, that was a long time ago.) My parents decided to start bracing. I started wearing a Spinecor brace soon after, and wore that for about a year. (This is when EmBraced in Comfort was born.) During that time, however, my curve continued to get worse. That brace definitely didn’t work for me, but we searched for other options.

I started wearing the Rigo Cheneau  brace next. Our Orthotist, Luke Stikeleather, whom I referred to as “Luke”, made my new brace. He is probably one of my favorite people on my medical team, and I still miss him today. Every year, my family would travel to Washington, D.C., which is where his office was at the time. He now works at the National Scoliosis Center.

After wearing the Rigo Cheneau for a few years, we started to see that my curve was progressing again. The Rigo had successfully kept my curve in check for a while, but apparently that time was over. We reached a decision with careful deliberation: I was going to need spinal surgery. Specifically, a spinal fusion, which involved lots of screws, hooks, and a titanium rod. At the time, I had just recently turned 12, and I was scared. A few months before the surgery, I no longer had to wear my brace, because they wanted to strengthen my back muscles before the operation. I actually fractured a rib a few months before, because my brace was too small, and didn’t even know it!

December 2013 was the month when the surgery would happen, and it was here. The date was just around the two-week mark.  I was terrified. Before surgery, my curve was just below 100 degrees. After, it was approximately 45 degrees.  Five awful days later, I was out of the hospital and ready to spend most of Christmas break lying down. Six months later, I was finally cleared to do all activities. It has now been two and a half years, and I’m feeling great! I play basketball, volleyball, and I lift weights.  Plus, I don’t have to wear a brace anymore, which is awesome.

Since I’m the new blogger, I wanted to try something different. I want you guys to ask questions. If you have any concerns, questions, or stories of your own, I want to hear about it. If you really like this idea, and there are enough questions, I will choose a few and answer them on the blog. That way, everyone will be able to see; a lot of you might have similar questions. Think of this as a sort of a “Dear Abbie” type of thing. I’ve been through a lot of different things when it comes to Scoliosis, so hopefully I can help all of you with your questions!

See you next week!