I really do have to stop tempting fate.
A few days ago, we did Botox. Even though I know that it isn’t a big deal, it stressed me out. Every time we do something new it stresses me out. But it went just fine, other than a lot of yelling and a bloody nose. And, being me, I said, I’ll look back on this, and it will seem like cake. Of course, that will be because we’ve move on to something scarier.
Welcome to something scarier.
It took exactly one day. That’s because we traveled from our town in South Dakota up to the Minneapolis area for Katie’s care. Because it’s a bit of a jaunt – anywhere from half a day to a whole day depending on how well she’s traveling – I stacked appointments and made a week of it. So, the day after the Botox shots, we met with our new orthopedic surgeon.
We’ve been talking with one ortho or another for about six years now. Katie has scoliosis, and we’ve been watching it, and wearing a TLSO. (BTW, when she had to be casted for a TLSO, she was two. When we received it, and the nurse roughly showed me how to strap her into it, it was the first time I really found myself saying, ‘I can’t do this!’ Do you hear me laughing at my own whiny self now? I am.) Every year, I have been looking at x-rays of Katie’s ever-increasing curve. And every year, I hear that we will eventually need to do something about this.
Something. That means something other than the brace, the therapy, the chiropractic, the hippotherapy, the craniosacral therapy, the hyperbaric therapy, the massage, the stretching that we have tried over the years. It means surgery. It means opening her up, and moving her spine back where it needs to be, and using a bunch of metal to make sure it stays there.
I have had years to get used to the idea that this is coming. But I’ve always managed to keep a spark of hope that we would avoid it. That she would stop growing before her curve got too big to manage. She’s only nine. She’s only four feet tall. As our nice new doctor said, ‘she hasn’t even hit her growth spurt yet’.
Last year, we talked with a different ortho, our local one. He isn’t a pediatric specialist, but he handles most of the peds cases in our area. He looked at Katie’s curve and said that we might want to consider doing something sooner than later, because he curve is smaller (T11-L4 ish) and sharper, and we may be able to get away with aggressively fusing just that length. But, he wanted to wait another year and see where we were at.
Where we’re at is here. An eighty degree curve. If you’re unfamiliar with this, I’ll tell you what an orthopedic surgeon/physiatrist that I work with told me: he would want to correct anything over sixty degrees, because after that it gets more complicated. After that, you start to risk encroaching on organs.
Well, okay. So, we’re sitting in our room and waiting to see our new doc, and the nurse comes in the does nurse stuff, and then she puts Katie’s new and improved x-rays up on the screen before she leaves.
I don’t need a doctor to tell me: this is not good.
So we meet the new doctor. He’s very nice. He has doctor ducklings following him: a resident and a student. We talk about Katie’s history and what’s been suggested and done to this date. He talks about misconceptions that many people have about the body jacket Katie has been wearing for years. (They don’t correct anything, and there is question as to whether they even slow the progression of scoliosis.) He tells me that he doesn’t usually suggest surgery the first time he meets a family, and that he doesn’t expect us to make a decision on the spot.
Me: Is there any advantage in waiting?
Doc: No. If anything, her curve will keep getting bigger. She is still pretty flexible right now. As she gets older, she is likely to get more and more locked into place. That will make the surgery more complicated.
Me: Would we need surgery if her curve stops progressing? (read: grabbing at straws)
Doc: (Gently) Well, if that were to happen, she could probably just be braced like she has been. But, there is NO WAY that will happen. (He didn’t shout, he just made it very, very clear.) This curve has momentum.
Me: What would the schedule look like for this?
Doc: The surgery would take about five or six hours. He would probably have another surgeon assist, and they could each start at one end, so it would take less time. She would need to be in the hospital for about a week. She would need follow up appointments at six weeks, four months and a year. She’d be out of school for three or four weeks. She couldn’t play contact sports for four months (not that she would).
I’m running low on questions. Oh, then there’s this one: So how many levels are you thinking we should do?
Doc: T2 to the pelvis.
I didn’t fall on the floor. But it was close.
…(find my composure. Use my mantra). Me: I had been told previously we might be able to get away with a smaller section. ?
Doc: Some docs try to do just the curving section. But what happens is that the stress of the curve is transferred to the neighboring sections, and after awhile, she would need a second, bigger surgery to fix that damage.
I know this is true. I read medical records and interpret people’s conditions for a living. I just don’t want to process that thought.
Me: I’ve heard about a selective dorsal rhizotomy. If she has to be opened like this, is it possible we could look at doing that at the same time, and she might gain some control over her legs?
Aside: the SDR is a surgery where a neurosurgeon uses an EMG to figure out which muscles are responding abnormally to nerve stimuli, and snips them. It is supposed to help the person have more and smoother control. I have a friend who had this done as a child, and feels it really improved her quality of life.
Doc: (Looks thoughtful. Ha! Nailed him with an unusual question! Score one for me.) Well, normally the rhizotomy is for people with more control to start with than Katie has. But, since she will be having surgery anyway, I don’t know. I can talk with a neurosurgeon here to see what they think of that idea. I’ll get back to you.
And then I’m out of questions. And my head is in a cloud – a dark one. I have spent years joking that I am keeping my head in the sand about scoliosis surgery – I prefer not to think about it, talk about, stress about it. I like to maintain some delusion that she will stop growing before this becomes critical.
Did you hear that sound? That was my head popping out of the sand.