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Talking To Your Child About Spinal Fusion Surgery
A spinal fusion surgery is a pretty common procedure for individuals with SMA. This operation is done to help people with SMA prevent or manage scoliosis https://smanewstoday.com/spinal-muscular-atrophy-scoliosis/.
I had this surgery in the summer of 2005, when I was 11 years old. In my experience talking with other people in the SMA community, I would say that most people who have this surgery do it when they’re younger. The longer you wait to do it, the more likely you are to develop severe scoliosis.
Spinal fusion is a major surgery, and recovering from it is physically and emotionally taxing. I was able to have mine before the school year started, but I spent much of that summer bedridden and unable to do much. The surgery was well worth it, as I was able to sit up straighter and improve my respiratory levels, but the recovery was long and painful.
If you are a parent or caregiver, I would recommend talking with your child and their doctors about this surgery. It’s not a decision to be taken lightly, but it’s likely that their doctors will recommend it. Talk to your child about it, and ask them what concerns they might have. Also, feel free to reach out to me and others with SMA who have gone through this surgery. I’m always happy to answer questions, and to talk about why I’m glad I did this procedure.
What questions do you have about spinal fusion? Who here has had this surgery, or has a child who has had it?
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10 Replies
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I had a spinal fusion when I was 8. In recent years, I’ve seen quite a few younger friends go through this as well. Anytime a child or parent ask me about it, I have to be completely honest and say it’s really rough. It is hands down the most painful experience of my life, and I think people should be prepared to expect that. On the flip side, I will also tell you that despite all of the pain and long nights, that surgery saved my life, and I do not regret it. It is also much better to do at a younger age. I have a cousin who couldn’t have the surgery until she was an adult due to her parents’ religious practices. Her surgery was 16+ hours (2x as long as mine) and we weren’t sure if she would make it through. Fortunately she did, but the road to recovery was long. I know a spinal fusion is a very scary idea, but I’m a big advocate for it (unless you ask my 8 year old self). It’s so worth it.
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I totally agree Halsey. I know I wouldn’t be where I am today if I hadn’t gone through this surgery. It sucks to go through, but it’s well worth it.
And yikes, that sucks about your cousin having to wait. Yeah, it’s definitely better to get it done when you’re younger.
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I had my fusion at age nine. This might come as a shock, but I actually consider it the greatest experience of my life. Certainly not the most fun, but the most profound. This is because I dreaded this procedure for basically my entire life leading up to that point, so it allowed me to conquer my biggest fear at a young age. Ever since, I’ve never really been afraid of anything, because I figure that if nine year old me can get through that, I can get through anything now. In terms of the actual physical side, it helped me tremendously. I had pneumonia on roughly a bi-annual basis, and I’ve had it twice since the fusion. Like Halsey, I firmly believe that it saved my life.
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That’s a good mentality to have, and I understand. As much as it sucks to go through at the time, it’s well worth it. And yeah, facing it when you’re younger puts things into perspective.
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I had mine when I was 10, and that was back in 1973. Like all of you, I am so, so happy my parents made me do it. Had it been up to me, I would never have agreed to it because, as a 10-year-old, I was terrified to have surgery. Unfortunately, nobody prepped me for the pain, so that was a big shock. It is probably the most painful thing I’ve had also, except maybe for the constant, chronic pain I’ve experienced as an adult over the last 10 yrs. The way they do it these days is so much faster, and recuperation is so much faster as well. I had to have a halo with 4 screws in my head & a body cast from my neck to my hips. I got rid of the halo after 6 months, but I was in the cast for a full year. My favorite part was being able to go around without a shirt on, like a boy, in the summer time. My 10-year-old self thought that was way cool!
My advice to parents would be to give your kid as much of the facts (about what exactly the surgery will be doing) as they can handle individually. You know your child best, so you know what level of intellect they are. I would also say that this is a parent’s decision, not a child’s. Any young person is going to say they are scared & don’t want to do it. They don’t want to risk the pain or the fear of anesthesia etc. That’s totally normal & understandable for them to feel that way. However, as a parent, you have to make tough decisions for your child’s well-being, and sometimes that means causing them pain now so they won’t have it in the future. I had a friend whose parents gave him the choice about whether to have the surgery or not when he was 11 yrs. old. Of course, he chose not to because all his friends said it really hurt. I’m sad to say that friend passed away when he was 28 because he constantly had pneumonia and his heart was very weak. This was caused by his spine being so crooked that it smashed his lungs and heart all to one side of his body and kept him from being able to use them to even half their abilities. It was very sad because having had the spinal fusion would have given him as much of a life expectancy as the rest of us. He also had SMA type II, so he could have still been with us today. I feel like his parents should never have given him the choice about whether to get it done or not, but they should have made that decision themselves based on adult experience & wisdom.
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Hi everyone!
My son had the surgery 3 weeks ago. Its duration was 12 hours, and it passed luckily without complications. Now he takes pain killers, however, I wouldn’t say, he experienced so strong pain, as I could imagine reading your stories.
A quick question: you were under your teens when you had the surgery. So I assume, you all had a growing construction in your spine. Have you had a second surgery at age of 15-16 to implant permanent metal construction instead of growing one?
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Glad to hear it went well Daria. I’m one of the “old timers” who had mine done almost 3 decades ago. I was 11 at the time. Very stressful for my parents with the long surgery and recovery. It was painful for me as it didn’t want to heal as it should have. As the others above have said probably the best decision my parents made though. Back then there was no such thing as growth rods, so it was only the one surgery that pretty much halted any further growth. I’ve heard that with the growing rods they do have to do a second surgery once they’re maxed out or the child is done growing. I know a girl who is 13 and was going to be having it done soon.
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Great question! I also do not have growing rods. It was an option, but my surgeon wanted to avoid having to do any further procedures. Instead, they made my rods slightly longer than nessicary so that they would hopefully end up in a good spot when I stopped growing. Fortunately, I inherited my grandmother’s short height and my rods are no in between the lower part of my shoulder blades. They started at the base of my neck.
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Daria, I’m so glad your son is not having a lot of pain! That will certainly help his healing process go much faster. I also had mine before they came up with the growing rods. My surgeon was one that had a new idea at the time, that’s why my parents sought him out. Instead of putting in rods, he 1st operated on my legs, taking pieces of bone from my shins (both of them). Then he put those pieces on either side of my spine to straighten it & stabilize it. The idea was that these bone pieces, acting as lines anchored out to the side as in a circus tent or a growing tomato plant, would grow along with the rest of my body including my spine. That way I wouldn’t need another surgery in the future to change anything out. I had my surgery at age 10 and have not had any more surgeries. I do have a slight scoliosis now but that’s because they just could not correct it to 100%. Not only have all the bones grown with me & stayed connected to my spine, but doing it that way allowed me much more range of motion in my neck and back and hips. That was the other selling point of his new way of doing it. I only have lower back pain & hip pain now, but they tell me that’s just because of the progression of my SMA & getting old.
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Thanks for the answers!
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