Teenage Scoliosis

So for the first time in my life, I’m dreading school starting again. I don’t know if it’s because I’m teaching now, so I have to go back to the daily grind, or if it’s because my kids are getting older and I’m realizing how few summers we have left together or if it’s because the Covid summer was so long that this feels short by comparison or if it’s because it has really been a pretty intense summer without much of a break. Probably a combination of everything. But while our vacation to Utah was amazing and everything we needed after the last 18 months, our #1 attraction this summer has been teenage scoliosis and the surgery that was done to correct it. I’ve posted about it on Instagram, but I’ve gotten a LOT of requests to put all the information in one permanent place as a resource to other scoliosis parents and kiddos. So. Here we have it: Our Scoliosis Summer.

Diagnosis

Clark was older when he was diagnosed–almost 16. Up until that point, we had no idea anything was going on. There were a few potential indicators–he sometimes complained about his back hurting, but we chalked it up to the fact that he’s basically an 85-year-old man trapped in a teenager’s body. He’s also smaller than other kids his age–after his whopping 9 1/2 pound entrance into the world, he’s dabbled in the bottom 5-10th percentile for height and weight most of his life.

We’ve always stayed on top of his checkups, but he was super overdue for his checkup in 2020. His birthday is in January, so we often get shuffled around if cold/flu season is bad. Between that and Covid delays, he probably hadn’t had a checkup in 18 months or so. In that time, he had a big growth spurt (which is when scoliosis often shows up in teens.) His doctor checked his spine and immediately became alarmed. She sent us for x-rays that afternoon (it was a Friday) and by Monday morning, her office was calling me repeatedly at school until I answered to tell me that they had scheduled an appointment for him with a specialist in New Orleans and I basically needed to drop everything to find a way to make that happen. They couldn’t give me any other details, so naturally, I was freaking out.

The X-Rays

I picked up his x-rays that afternoon from the hospital and pulled them up on my computer, convinced they had made a mistake (as if I am in any way qualified to determine whether medical professionals have made a mistake or not ????) and my heart sank when I saw them. I felt so guilty for not really listening to him when he said his back hurt, that I hadn’t pushed for more regular checkups, that it was somehow my fault. I thought scoliosis was just a matter of straightening out the spine and, because it’s flexible, that should be relatively easy. I didn’t realize that that is how the bones had grown and straightening them out without surgery is virtually impossible.

The Denial

In my mind, surgery was the worst possible outcome. I looked into “scoliosis camp” and Schroth physical therapy, but we don’t have any Schroth therapists near us (and it’s so incredibly expensive) and ScolioSmart (scoliosis camp) felt scammy to me. I didn’t realize that braces aren’t designed to correct the curve, they just prevent it from getting worse (I also didn’t realize how terrible bracing is…it’s basically a torso cast that has to be worn nearly constantly for years.) Regardless, he wasn’t a candidate for bracing because the curve was too severe and he was too old and close to being done growing, When I showed the x-rays to a few friends in the medical/orthopedic/physical therapy industry, the consensus was basically that surgery was the only way to correct it and prevent it from getting worse was surgery. I cried a lot. He was anxious and angry. A good time was had by all.

The Orthopedic Surgery Visit

In late October 2020, about 10 days after that first visit with the pediatrician, we went to New Orleans to meet with his surgeon for the first time. They did more x-rays and discovered that the curve was even more severe than the local hospital had said (49-50 degrees instead of 47.) The surgeon said that surgery wasn’t something we were going to rush into, but we needed to keep an eye on things. He talked about all the options with me and explained the pros and cons in a lot of patient detail. He wanted to see if and how the scoliosis was still progressing, so he prescribed physical therapy, vitamin D, calcium, and magnesium supplements, and told us to come back in 4 months.

Clark did the PT and exercises and took his supplements religiously because he absolutely did NOT want to have surgery. That said, his back pain was getting progressively worse and things like sitting or standing for too long could knock him out the whole next day.

Deciding on Surgery

When we went back in February, the x-rays showed that his curve had progressed from 49-50 to 54-55 degrees (in 4 months!) At that point, the doctor said surgery was definitely the best option and I agreed.

Clark was pretty mad…he felt like he had done everything he was supposed to and things still got worse (and I was sad that he had to experience that at 16…those are things we desperately hope our kids won’t have to experience, even if they inevitably will because it’s part of being human.) He spiraled into kind of a dark place. They scheduled surgery for mid-late June, which was good because it gave us time to do something fun first and also time to recover afterwards.

Leading up to Surgery

I joined a pediatric scoliosis Facebook group and did a lot of research on what to expect with recovery and how to help them best. In my research, I was surprised to learn that the recovery was very similar to a c-section, and, having had 3 c-sections, I’m basically an expert ????.. Obviously, there are some key differences (bones vs. muscle, front vs. back, new baby vs. straight spine), but ideal recovery looked very similar in terms of hospital stay, post-surgery goals, and recovery time. So I dispensed my motherly wisdom early and often and I’m sure he was very tired of it by the time surgery rolled around.

I refilled my Xanax and bought a lot of blankets because apparently when I’m stressed and don’t know what to do or how to help, blankets are the answer. I’m going to write a blog post very shortly where I’ll share a list of things I got for his hospital stay and recovery and how helpful they were.

He had a pre-op appointment in New Orleans two weeks before the surgery, so 2 days after we got home from Utah, we loaded up and headed down there. He met with a lot of different people–nurse anesthetists, RNs, fellows, residents, PAs from his doctor’s office, etc. (his doctor was in surgery) who all explained things to him and answered all our questions. They did x-rays and labs and he got to see the surgery area of the hospital, all of which helped ease our minds. Of all the visits, this was probably the one where we left feeling the most confident and least freaked out.

The Day of Surgery

We had to be at the hospital by 5 am on the day of surgery, so we spent the night at a hotel in Metairie (a metro suburb of New Orleans). We went to dinner the night before, but kept it pretty chill…I think we were both pretty anxious and neither of us slept very well that night.

When we got to the hospital the next day, they did more labs and vitals, had him put a gown and compression stockings on,

gave him some Versed to help him relax (relax is an understatement…????), and put this weird inflatable disposable blanket called a Bair Hugger on him to keep his core temperature stable.

They took him back to surgery about 7:45 and thus began the interminable wait. They called me periodically from the OR to give me regular updates (occasionally they called the receptionist at the waiting area). They closed him up about 12:45, but he was in recovery for several hours before I was able to see him.

What Happens in Scoliosis Surgery

For Clark’s surgery, they shaved off some of his vertebrae to accommodate two titanium rods. The bone powder was used for a bone graft. The rods were aligned to the curve in his spine and they straightened his spine as much as was safe. Then the rods were screwed to his vertebrae and the vertebrae were grafted together so eventually, they will all be fused. That means that he will lose any mobility and remaining growth in that portion of his spine. His surgeon could have straightened his spine even more if he had fused down one more vertebrae, but he felt that having that mobility in the lowest part of his spine/hips was more important than getting a little more straightness (and we agree.)

All of it makes my toenails curl and I’m glad there are people who shave bits off children’s spines because I certainly don’t want to.

RECOVERY

Immediate Recovery

The hours after surgery were rough. They had a hard time stabilizing his vitals for about the first 24 hours, so alarms kept going off because of his blood pressure and oxygen and nurses kept running in. Eventually, they put him on oxygen until things leveled out.

He received several doses of Dilaudid (an incredibly powerful narcotic) in recovery to try and get the pain under control, but it was very touch and go.

He had a pain pump and lots of drugs, so all that helped, but the next day, they took the pain pump and transitioned him to oral medications and that was pretty awful. Honestly, the first 72 hours were very bad, there’s no way around it. Like with a c-section, they wanted him up and moving as soon as possible, which was unbelievably hard and exhausting for him and hard for me to watch him struggling and being in so much pain. He didn’t want anything–ice, water, food, gum, Gatorade, TV, music, Facetime, phone calls, presents, nothing. Eventually, he wanted to have Friends on (which is kind of funny because he’s not, like, a Friends superfan or anything) and sometimes some music and occasionally Facetime, but it was a struggle. He could feel the rods–like, they didn’t hurt, but he could feel them–and he really hated that. The muscle spasms were bad and unpredictable. He was very down, to the point where he was regretting getting the surgery.

They were anxious to discharge us, but I wasn’t ready to go (especially with the 4 hours drive) until his pain was manageable and he was mobile enough to shower, use the bathroom, position himself in bed, etc. He had the surgery on a Tuesday, and on Thursday, I thought we were going to be there forever based on my criteria, but on Friday, he turned a corner and things were so much better and we decided to head home.

Recovery at Home

I wish we had filled his prescription in New Orleans because by the time we got back home, he was HURTING and I was having a hard time finding a pharmacy that had his pain medication in stock. The first 48 hours at home or so felt kind of like a step back. We had a hard time figuring out where to have him sleep–I got a power recliner for him before the surgery, which was great during the day but not so much at night. He was surprised to discover that stairs weren’t an issue at all, so he thought he’d go upstairs and sleep in his own bed, but he couldn’t get into the bottom bunk. We ended up having him sleep in my bed for a few nights (and I slept in his bunk bed). I was waking up every two hours to give him pain medicine and Valium for the muscle spasms and was completely exhausted, like to the point where I was getting a little delirious.

That said, it was good for him to be in a familiar setting with his siblings (who couldn’t visit because of covid) and friends with better food.

Longer-Term Recovery

We made sure he was taking little walks every day (usually to the end of the street and back and then around the block) and staying on top of his medication. We ended up getting just a few more oxycodone from his pediatrician when he went in for an incision check and he only needed 2 or 3 beyond what he was originally prescribed (5 days worth, but we extended the time, so those lasted 7-8 days). The Valium ended up being more helpful long-term because those muscle spasms persisted, especially as he became more mobile.

We’re about 5 1/2 weeks post-op and he hasn’t taken any Tylenol, Advil, or Valium for probably a week or more. He was on oxycodone for probably 10 days post op, tapering down as needed. He had his first post-op appointment with his surgeon a couple of weeks ago and he was VERY pleased with Clark’s recovery–scar looks good, x-rays look good, Clark himself looked good.

We go back in August for another check, but I’m not sure how frequently we’ll go after that.

How Are Things Now?

He is cleared to drive and he’s been going to rehearsals for his high school’s production of Hairspray (he’s Corny Collins). He can feel the rods, but they don’t really bother him other than the fact that they’re in his back and never coming out. He isn’t in any pain (other than occasionally the incision) and is actually in less pain now than he was before the surgery. He’s able to sit for sometimes hours at rehearsal and is fine, whereas before the surgery, that would knock him out.

I asked him if he’s glad he did it and he said, “Glad is an exaggeration. I think it was necessary.” He had some weird blood pressure stuff going on that has pretty much disappeared since the surgery, so we (like, the doctor, Clark, and I, not the royal we) think that the scoliosis was putting pressure on his heart and kidneys and causing his blood pressure to elevate.

Wrapping up the Scoliosis Summer

Like any recovery from a major medical event,  it’s something that has divided our lives into “befores” and “afters.” It was harder than either of us anticipated, but also he has recovered better and more quickly than we anticipated. I’m going to write another blog post shortly with practical tips and advice for scoliosis (and other major medical events). He was very down, to the point where he was regretting getting the surgery.

Frequently Asked Questions

Q: What degree was his scoliosis curve?
A: By the time he had surgery, 55 degrees. Severe scoliosis starts at 40 degrees.

Q: How long will it take to heal?
A: He will probably not feel awesome for about 2 weeks. By 3-4 weeks, he’ll start getting back to life as normal and by 4-6 weeks, things should be pretty routine. But no PE and nothing heavier than 10 pounds for 6 months.

Q: Does he have rods?
A: Yes, he has two rods screwed into the vertebrae that were corrected.

Q: Will this affect his physical abilities in the future?
A: It shouldn’t; the goal is to improve them. He was in a lot of pain that was getting progressively worse. Additionally, he was starting to have cardiopulmonary issues that we think may be related. That said, he will lose mobility and growth in the vertebrae that are fused.

Q: Who was his doctor?
A: Dr. Accousti at Children’s Hospital in New Orleans. We love him.

Q: Is he taller?
A: Yes, by about an inch.