Scoliosis Surgery

I had a spinal fusion for treatment of scoliosis, but this was when I was age 11, which was in the ‘90s, so I’m not sure how translatable my situation is. My mom said my orthopedic surgeon was a top orthopedic surgeon at the time. I do know the risks of surgery can increase as we age, and it can be really difficult with chronic back pain to identify if the pain is generated from the biomedical source or from increased pain sensitivity the longer someone is in pain. It’s the reason some people can have surgery, but the pain persists.

To your question though, although my surgery was preventative, I was able to resume basically any other activities I wanted to do, except I lost flexibility, so the backbends I used to be able to do were no longer possible. I recall the initial recovery feeling pretty brutal, but I have a lot of side effects to anesthesia. I was in the hospital for less than a week and walking within five days. I was back at school after another full week at home, but really fatigued.

It took 12 months for what my doctor considered “full recovery.” I don’t think bowling and working out would be a problem, but you’d need to work up to it.

It’s really frustrating to become so limited. While I’m well past my spinal fusion, I have chronic pain from several other conditions.

If you’ve exhausted physical therapy with good PTs (emphasis on “good” PTs!) with experience in chronic pain, including a pain neuroscience approach (such as graded motor imagery/pain laterality or the approach used in apps like Curable), then it may not hurt to have a consultation with a surgeon to understand better the possible risks/benefits.

Spine surgery can be pretty drastic though. I recall my parents really agonizing over it. We saw at least two surgeons and my curvature was considered severe.

I’ve considered surgery for my hip for example, but I’ve decided to really lean into PT and a pain neuroscience approach to see if I can regain more function to stave off surgery. It’s hard to tell with chronic pain how much of my pain is coming from my actual orthopedic condition (hip dysplasia) and how much is from central sensitization (the longer you have pain, the more your brain and nervous system gets sensitized to pain and pain signals get magnified even if the challenge remains the same or if you get stronger). So I want to see if a pain neuroscience approach to try to “turn down” the pain signals helps me enough. Because if that’s my larger problem, surgery won’t change much—it’ll change my body, but if my pain perception doesn’t change, it doesn’t get me where I want to go.

It’s a really rough situation. Wishing you all the best.

Thanks so much for your response. I am very interested in the neuroscience approach, as this is new to me. I will research this thoroughly. I have multilevel lumbar spondylosis, stenosis at the L2-3 and L3-4 and nerve encroachment of the L-4 root. My left leg is very painful and preventing me from walking without a cane. I want to exhaust every other treatment before I would even consider surgery. Thanks again for you information.

You’re welcome. I’m sorry this is happening to you. It gets so hard when it feels like life gets smaller and smaller. Have you tried PT yet?

I have had the most benefit from the right PT (I had incorrect diagnoses for years, and/or they were giving me exercises that were too aggressive when I need to go really slowly and build up because of chronic pain), graded motor imagery (my PT told me some of the original research was originally done on chronic back pain—there is an app called Recognise that I use for right/left discrimination), and what’s now being called “a pain neuroscience approach.”

I mentioned the app Curable, because one of my Mayo PTs recommended it to me. It’s a paid subscription (as most things are nowadays of course, sigh), but they have a lot of good free content and a podcast if you just want to find out what it’s about. I found their online and introductory info about how the brain and central nervous system processes pain really well done and much better than the handouts I was originally given years ago lol.

I haven’t personally tried it yet, but my PCP said she’s had patients who had very positive experiences with it. It’s based on research and founded by a team of healthcare providers who actually have chronic pain. So it might be worth checking out as an intro.

My one gripe so far about it is that it sometimes gets a bit much on the positivity and really emphasizing, “If you just can redirect your thinking about pain, it’ll all get better!” I understand well that damage on imaging doesn’t always correlate to pain, but they Really emphasize it. I found it so upsetting I talked to my doctor about it because it was starting to make me feel bad about myself that I’m still in pain.

She assured me that as they say, pain is multifactorial, so it’s not an either/or thing: biomedical causes vs. pain neuroscience, we need to consider both. But activities like those in Curable can help add drops to the ocean to lift the ship just like medication or surgery might.

A different doctor recommended the book, “Unlearn your Pain,” if that may be of interest.

Anyway just thought I’d mention that since at least with Curable, the way they explain central sensitization can sound a little “woo woo” if you’re not expecting it.

Wishing you all the best.

Hi 👋
I am looking at a similar surgery fusion from T12-S1 and am an active 67 years old and the sciatica pain from stenosis etc keeps me from
standing or walking. I am going to try an ablation to see if I can buy more time. I will post next month after the procedure.

However, my scoliosis is not as significant as yours. I believe 50% is the threshold where you can start to affect organs and breathing etc. I would definitely check that out.

I have spoken to 2 other females (similar ages ) who had the surgery that have returned to an active lifestyle .. adapted for new mobility restrictions. they both said the 1st year was difficult and to keep the faith and not give up.

I have consulted with 5 surgeons and have a pain doc. Feel free to write me for further discussion.
Good luck
Tamra

@emo and @cynthi13
You may be interested in this video about Central Sensitization. There are also these Connect discussions about this topic.

Chronic Pain - "Central sensitization syndrome and treatment?"
https://connect.mayoclinic.org/discussion/central-sensitization-syndrome-and-treatment/
Chronic Pain - "Has anyone been diagnosed with Central Sensitization?"
https://connect.mayoclinic.org/discussion/has-anyone-been-diagnosed-with-central-sensitization-if-so-id-like-to/

I had surgery for scoliosis 5/1/24, since it was a surgery that combined relieving cord compression and myelopathy, I don't really know the specific effects of that correction. I do feel that I'm glad I did it. Even though healing is a work in progress, I think it's better to do it sooner rather than later. Especially before winter sets in. I wish you the best.

Thanks so much for your reply! Are you able to resume all your normal activities? Are you pain free now? As you can probably tell, I am terrified of having the surgery, but can’t live like this either. I am experiencing acute sciatica due to the curvature, which is compressing nerves. I need assistance with a cane to walk. This is so difficult because I have always been an active person. You have given me hope that the surgery is worth it. Wishing you good luck with your recovery!❤️‍🩹

YES! As we age the muscles can't hold the scoliosis spine erect. Surgery to straighten helps relieve your body over going into spasm and radiating pain and nerve compression/impingement.
1) find the best surgeon you can (I kissed some really bad frogs before landing on my prince ortho surgeon at UCSD over 20 years!
The surgeries continue to get better and better.
My last cervical surgery last summer went from one to two! Unfortunate. However, I understand my body is in better shape even though it is a B___ch to recover from the more massive second cervical surgery. They didn't know until they went in what the problems were going to be on the first one. My bones fell apart in their hands so the screws wouldn't hold.
If I didn't have all my myriad of surgeries I would be helpless at 67.
You can also try MFR (there is a section here). I am doing that NOW after all the surgeries. Honestly, it wouldn't have changed the spasms because the spine needed straightening. But now I can work on everything and heal.
It takes a while, no lie.
Botox can help stop the spasm pain from muscles continually pulling.
The only time I didn't have pain is when I did pilates for 9 months. But I couldn't keep it going.

Thanks for your response! That is very encouraging to hear. I also have osteoporosis, which makes this surgery a little more risky. I have been getting treatment for that the past 10 years, which has stabilized. I now am osteopenic. I am more than likely going to have the surgery.

Thanks for your response! It truly is a big decision, except when the pain from scoliosis has taken control of your life. I am definitely leaning toward the surgery. Good luck to you.