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Andrew and His Rare Congenital Scoliosis Update

A few weeks ago, my son, Andrew, my mom and I jumped in my car and drove 6 hours to Rochester, MN to Mayo for a second opinion on Andrew's rare form of scoliosis. We also wanted to see if he was a candidate for a relatively new surgery alternative to scoliosis called "Tethering".

Andrew was not a big fan. He knew the appointment would not hurt but would take several hours of waiting and lots of x-rays and scans. We have been watching his back since he was born and he knows how long these appointments can take. However, once he discovered that the Kansas City Royals were playing the Minnesota Twins that weekend in Minneapolis, his whole demeanour changed. 

So, we decided to make a weekend out of it. Andrew would endure the several hour long appointment, and we would then drive one hour to Minneapolis and attend the game. Andrew wants to visit all professional baseball fields, so he was on cloud nine. 

We get to Rochester, stay the night and wake up and head to Mayo for his early morning appointment. We didn't have to wait that long, which was surprising to all of us. The room at Mayo was nice, and it felt like I was in a room on a cruise ship. There was a nice long couch, and the three of us took a seat. We visit with one doctor and answer a lot of questions that they already have the answers too with all the records I had sent up, but I answer them anyway. Andrew and I are quite used to this, and I can pretty much tell you what questions they will ask and my answers are almost robotic now. 

Finally, the doctor arrives. I scheduled with this particular doctor because she is the one who has performed the new scoliosis surgery. She steps in the room and doesn't waste much time telling us that Andrew is not a candidate for the "Tethering" surgery. She was very nice about it and states that she has only, just recently, performed this surgery on her very first congenital scoliosis patient. All her other surgeries have been on idiopathic scoliosis. She states that there is just not much research on Andrew's form of scoliosis, but she hopes that that can change. Maybe Andrew can be the change since he is our little trailblazer, even though he isn't that little anymore. 

She examines Andrew and reviews his files. She then schedules more x-rays. The three of us head to the x-ray waiting room and changing room. Andrew is told how to put on the gown and shoes, and he enters the changing room. My mom and I sit down, and I wonder how he is doing in there. He comes out and can't figure out how to get the gown on. My mom and I laugh because I had just told her that he will probably not put the gown on correctly. Sure enough here he comes with one arm in the head hole and the other arm just hanging out. We all laugh. I help him and he returns to the changing room. He finally emerges with the gown on and the shoes. The shoes were a sight. The barely fit him, and he could barely walk in them. We were all laughing, and I wanted to take a picture so bad, but Andrew said he would never talk to me again if I did. 

He follows the technician back and my mom and I wait. He returns rather quickly. I even said to him, "Wow, that was the quickest set of x-rays you have ever taken. Are you sure they took everything?" He just runs to the changing room and changes. 

We return to our room and not 5 minutes later the other doctor comes in and apologies that the technician did not get all the x-rays they had asked for.  I figured!! So, we head back to the changing room to do it all over again. Andrew managed better this time, but the shoes were still a sight. 

We finally get all the x-rays done and then we wait. The doctor returns and states that his curve had not really changed since 6 months ago, which is a good thing because his curve was growing a lot when he hit puberty. She says he has probably slowed down and would not be growing as fast now, which is good because hopefully, his curve will remain stable as it did from the age of 3 to 12. 

However, she did tell us what surgery she would recommend, and it is the same surgery his doctor at Children's Mercy has been telling us all along. Hemivertebra Spinal Fusion. UGH!!

He has a deformed vertebra, and that would have to be removed. They would then put a rod from L1 to L4, leaving L5 even though she doesn't think L5 would last long. So, basically, his whole lower back would have a rod, and his range of motion would be very limited. 

She said she would be more than happy to continue to see him and perform the surgery when we decided we were ready, but she did say that the doctors at Children's Mercy are excellent and she has 100% confidence in them. Plus it's close to home.

She continues and tell us that we have time. We don't have to do anything now. The curve is slowing down, 42-degree curve with a lift, he isn't in any pain, his appearance is fine, and he is super active. He may never need surgery, especially if we try some holistic approaches to maintain where the curve is and to prevent pain. 

So for now, we continue to wait, visit the chiropractor, get a lift for his shoe and continue physical therapy. We will be trying a different type of physical therapy that is tailored towards scoliosis this time. It's called the Schroth Method. 

"The Schroth Method is a nonsurgical option for scoliosis treatment. It uses exercises customized for each patient to return the curved spine to a more natural position. The goal of Schroth exercises is to de-rotate, elongate and stabilize the spine in a three-dimensional plane." John Hopkins Medicine

Now the trick is to get Andrew to actually do this. As with any teenage boy, he doesn't listen to me and to get him to do this at home will be a struggle. This method is pretty intense, and you have to be dedicated. However, I do think he is starting to grasp the concept that this is something he will have to work on his entire life. Preventing surgery is our number one goal. If we can stop the progression of the curve and avoid pain, we may be successful in prevention. I "THINK" he is starting to understand. 

But now all he cares about is the baseball game. We head to Minneapolis and stay one block from the stadium. You can see the jumbotron from our window. We watch it come on and decide to head to the game. Unbeknown to us, it is Prince Night and the line to get in is all the way to our hotel door. The line moves fast, and we were only ten people away from getting a purple Prince jersey. Dang it!!

They played Prince music all night, and even though the Royals lost and no one scored until the last inning, the game went fast, and we had a blast. Andrew was in his environment, and his scoliosis was the farthest thing from his mind. 

In the end, we got a second opinion, got a lot of quality time and had fun. And Andrew now has 2 baseball fields crossed off his list.