Scoliosis - Introduce yourself and meet others

I had apifix surgery for my scoliosis in October 2020 at Mayo Clinic Rochester when I was 16. Although I was not in significant pain before the surgery I know it had to be done to stop my curves progression. Recently I have been struggling a lot with posture, walking straight, and keeping my torso straight. I have tried PT but it didn't really help. If anyone has any advice to gain better posture and make my body look straighter it would be greatly appreciated.

Thank you

I have struggled my entire life with severe scoliosis and I am 75. It was not corrected when I was young, like you and now I have been advised it’s not feasible. My posture has always been poor. I bought a little upper back brace to wear under my clothes and it has helped. You were wise to have the surgery while you are young. Best wishes!

I had polio at age 11, in May of 1955, due to the Cutter Laboratories "incident" (They did not follow the Salk protocols and delivered a LIVE virus in the Salk vaccine complimentary sent to pharmacists in San Francisco and Los Angeles). My father, an LA doctor, got the vaccine from his pharmacist and happily gave it to me. He never forgave himself....but no one knew. I had a rather mild case because it was expected. I was treated immediately by the Sister Kenny method of hot packs and deep, stretching message. I went back to school with one shoulder higher than the other and a limp but physical therapy and years of "corrective gym" helped immensely. My father noticed a mild scoliosis when I was 16. The weak muscles on my left side couldn't keep up with the strong muscles on my right, so keep pulling my spine. At age 45 I was hit hard by post polio syndrome. The pain and weakness was horrible. An orthopedic doctor diagnosed me.....that because I had been active and my muscles were so atrophied, I had been using my ligaments for movement and they had stretched out. He gave me prolotherapy (google it). The improvement was amazing!!! I have been having prolotherapy since then every other month. (It's expensive and not covered by insurance and worth every penny) It definitely keeps me pain free and strong. I also gave in about 10 years ago and started wearing a lumbar sacral corset from dawn to dusk. I hate it but it takes away all the pain in my back. (see Freeman manufacturers.......talk to Diane for advice or email me). I have PT every week and deep tissue massage as much as I can. Someone mentioned Rolfing and YES......it works well. I don't know about any of you, but the muscles I have left just tighten and go into spasms and the PT and masseuse need to separate the threads. My scoliosis is now quite severe. I went from a classic J curve to now an S curve. My ribs keep expanding and clothes no longer button. I am an 80 year old woman trying to defy the odds. Happy to meet you all.

I have a 40 degree scoliosis curve and am scheduled for a minimally invasive surgery from L4 to T11. My surgeon said it’s possible that he might be able to do an L4 to T 12 but that will be determined during surgery. My back pain and intermittent sciatic pain dictates what I can do each day, and how long I can do it. It’s getting worse, quickly, and I can’t live the rest of my life like this.
I have been riding horses all my life and hope that I can return to riding after I am completely healed.
I just recently found this support group and I’m so grateful to read and learn about what others have experienced.

Hello, everyone. I am an S curve scoliosis person who was never diagnosed until a few short years ago. I am now 87. The diagnosis finally explained to me why my waist is higher on one side of my body than the other. In addition to scoliosis, I also have neuropathy which plagues me the most because it keeps me awake throughout the night. But the scoliosis keeps me from walking and standing during the day for more than 15 minutes at a time. Then I have to sit down to "decompress" for a few moments before I can get up and continue what I was doing. Overall, I still manage to live normally at home taking care of myself and 90 year husband.

@arkansaslady are considering surgery?
I am 54 and was diagnosed with scoliosis less than a year ago. Went throughout life with one shoulder higher, one hip higher, walk with a slight limp and the pain….getting worse all the time. Surgery next month.

Hello, Sherrym25. Good luck with your surgery. You are young so I think surgery is a good option for you as long as you are otherwise in good general health. I am 87 and I don't need surgery of any kind anymore. Just plan to carry on with what I've got.

@arkansaslady Thank you so much! Yes I’m in good health, other than my back. Looking forward to a future without as much pain.
I’m glad you are able to take breaks and sit for a bit to help with your back pain.

Hi, all. I was told I had mild scoliosis when i was in my late 20s. It was treated as though it were completely insignificant, so I never gave it any thought. I am now 72, and I can see that my torso has shifted significantly to the left of center. I have severe lumbar stenosis, so all the nerve pain I experience in my legs, glutes, and feet are said to be from that. And I am not a candidate for surgery or steroid shots because of the osteoporosis. Once again, no one is addressing the scoliosis, which I think might be causing a problem mentioned in a 2023 post by planaria -- muscles tightening horribly, particularly after exercise. Massage therapists are reluctant to do deep tissue work or myofascial release on me because of the osteoporosis, especially because I am tiny (90 pounds). Can any of you make some suggestions about what sort of physician might actually take the scoliosis component seriously, or what kind of massage might be do-able and useful? I am really struggling to keep active!

Hi, sherrym25. Wishing you all the best with your surgery. I rode horses for more than 20 years and had to quit because of severe osteoporosis and lumbar stenosis. I know how heartbreaking it is to have to give up riding, so want to send encouragement and good thoughts your way. Hope you get back in the saddle soon!