Kasey's Scoliosis Journey

My son Kasey turns 14 on December 14th. His scoliosis was discovered just after his first birthday. It was of little consequence back then compared to his other health struggles. They were giving him an entire body work-up due to uncontrollable seizures when they discovered the scoliosis and a hole the size of a quarter in his little heart. At that time, the hole was the immediate concern because it was so large and even having a bowel movement could have caused him a heart attack. That was immediately fixed and we began monitoring his back. All these years he has been in multiple body casts and braces for months at a time to try to control the curvature.

In 2002, K had a partial spinal fusion in his lumbar area. They added cadaver bone to a vertebrae that was triangular-shaped and he went into a body cast immediately after for a few months. He was given a wheelchair and we were told not to let him walk for a while. So, I would pull the wheelchair up to our basketball hoop (because b-ball was his fav!) and my other son, Noah, just a year and a half old would fetch balls for him. I believe we only made it about a week before K figured out how to wiggle out of his chair and I found him standing up playing ball WITH Noah and that was the end of keeping him down. Same with his open heart surgery. Just a few days post-op, he was standing up in his hospital crib shaking the side of it! He sure is a trooper and if you know him, he's got a wonderful attitude so I'm sure that his upcoming surgery will be no different.

Since 2002, it has only been body casts, braces, and frequent doctor visits to closely monitor his growth. In late 2008 we got news that it was time to address surgery. We did everything needed and even drove through a massive snow storm to Salt Lake City Shriner's for the surgery. When we met with doctors however, they said it was a no-go. And we've been on the "surgery or not" roller coaster ever since. Some of you have been on that with us and probably got tired of us getting all ready for surgery only to say it was cancelled. It was very emotionally taxing, and honestly, it will be a relief not to have this major surgery looming over us anymore. We never could totally understand why surgery kept getting cancelled. Now we plainly see it was because no one really, really knew what the best plan of action was.

Last year in December we met with K's docs to discuss recent results of his spine MRI and CT. We were told that his spine had gotten worse and was very complicated. Shriner's deal with children and although K is a child, they said his back and spinal cord had issues more commonly seen in adults. They said they would need to consult with other docs around the country to see how to proceed because the risks of doing surgery on his complicated little back were just as risky as not doing surgery. There is an issue of his own vertebrae damaging his spinal cord if left untreated but to untangle and fix the mess that his back is in, comes with the same risks including paralysis, loss of bowel and bladder control, diminished quality of life, loss of the ability to walk, etc. It was very clear to me that we had now exceeded Shriner's scope of knowledge, the docs were perplexed, and we would need to find someone who was comfortable takeing his case.

We sat in limbo until about a month ago when I contacted some local docs recommended by Shriner's. Our new doc looked at the CT/MRI results and concluded the same -- it is highly risky, but surgery needs to be done immediately. The new info he presented, however, brought all the on again/off again limbo into clearer focus. What we hadn't been told previously was that his 2002 fusion was no longer in place, that he had a tethered cord (which is that his spinal cord is being pulled on at the bottom due to an attachment called a fatty filum), and a small syrinx or outpouching in his spinal cord. We had him tested years ago specifically for tethering and syringomyelia at the recommendation of our chiropractor. The results came back negative. You can imagine our shock last month to find out that those complications actually did exist and had existed all along. The issue is that someone might have overlooked these things because they were so small and hard to see. The on again/off again kept happening because in light of all the extra issues, surgery is risky and there is no guarantee it will makes things better and not worse. There is no manual, no story that is identical to what we are dealing with and hindsight will be our only guide as to whether we made the right decision or not. The awesome praise about that visit is that the doctor said he is so much more flexible that he should be (I think it's because our awesome Chiropractor worked on him nearly weekly since we found the scoli) and that kiddos with Kasey's degree of curvature have usually had multiple surgeries due to internal organ compromise...his organs are healthy and happy :)

So, a few weeks ago we met with a neurosurgeon to discuss spinal cord, tethering issues that would need to be addressed in their own surgery prior to the fusion surgery. She also met us with some perplexity. I should be used to this with K at this point because nothing in his life has been cut and dry. One doc years ago used him as a case study because of his complexities. The neuro said she would ask other neuro's and see what their opinions are because spinal cord surgery may be necessary but it may not be. Well, today her call came. He needs to have surgery for his tethering but originally we were told it would require two surgeries, now they are going to do the fusion and tethering in one. August 29th. That's our day. Tomorrow we go in for a pre-op appointment where we will learn more about what's to come. I've stalked these docs online and learned all I can about them and their reputations and I feel 100% comfortable with them doing it. Where I lose it is in the risks and the amount of pain they tell us Kasey will have post-op.

The expected outcome for him is that after 6 mos of recouperating, he will be able to join right back in to all the sports he loves! He should be able to walk further distances, and his daily back pain should become little to nothing. He should be straighter which will lighten the load on his organs, it could possibly cure his migraines as thethering of the cord can cause them. And it could give him enough height to slam dunk a basketball! (Well...almost!)

We are fully placing our faith in God and this hasn't come without lots of prayer. We feel peace about moving forward with surgery but we know there's no turning back once the decision is made. There is no way to know what the future holds. We feel it holds peace, health, prosperity, and long life for our son and we are holding tightly to that.

The neurosurgeon will go in and cut the attachment that is causing the tethering of his cord. The biggest risk with her is that she could cut a nerve root and it could cause numbness in a certain area. Her part is self admittedly easy compared to the other two docs'. The spinal fusion will be from neck to pelvis. It will be an 8-12 hour surgery with docs who have done many of these surgeries in third world countries with much less technology and even by candlelight. God led us to these doctors, of that I am sure. In the link below, you can learn about the fusion surgery as told by one of Kasey's actual doctors.

We know the power of God and resiliency of our kiddo so we ask you to join with us in praying for Kasey, our docs, and our family as we face this last foreseeable hurdle in Kasey's journey to wellness. I am not beyond begging for your prayers and in advance, thank you, because you will never know how much those mean to us.

I am planning on using this blog to regularly post updates to family and friends so feel free to subscribe if you want to stay in the loop. Any who know me, know I am not good at making/answering phone calls so this will be a good spot to get info.