Scoliosis - Introduce yourself and meet others

I’ve had scoliosis since my teens or at least it was first diagnosed in my teens but it is thought to be genetic. You cannot do much to correct on your own except try to be pain free. The bumpy roads makes vehicle travel treacherous for the back. My degree of curve is 20-23 degrees lumbar and thoracic and causes me pain in my upper back mostly. Unless you have a magic carpet bumpy roads are a given or walk.

Looking for others with adult-onset scoliosis. Mine is quite severe; twisting serpentine spine causing me to use a walker within two years of first noticing pain and curvature. One MD commented that I looked like two people standing side by side, the curve is so dramatic.

The only option offered to me at age 70 is pain management and physical therapy. Does anyone else have a different experience? Bracing, perhaps?

Hi @reneeksmith Welcome to Mayo Clinic Connect. Scoliosis and adult onset scoliosis is out of my area of experience but I did find a discussion in our forum with a fellow mentor, @jenniferhunter. She initiated the discussion with “Answers about Controversial Trends in Spine Care” that you might find interesting. I posted links to the original conversation as well as a reply to another member who has the same spinal condition.

This is a link to the comment in the discussion
https://connect.mayoclinic.org/comment/638896/
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https://connect.mayoclinic.org/discussion/controversial-trends-in-spine-care/?pg=2#comment-638896
There is one thing I’d like to toss out to you. My daughter works with a personal trainer in Functional Patterns (Minneapolis) but there are facilities world wide. https://functionalpatterns.com/
There are often photos of clients the trainers have worked with in their training clinics. Several of these are people who have scoliosis. Young and older. Significant changes took place when the clients learned the proper exercises needed to counteract the contortion of the disease. It’s just something I thought I’d mention.

I hope you can find some answers in the group. Are you having any relief with the PT your doing?

@loribmt Thank you for your quick response and link to prior conversation. I, too, was dismissed for surgery by orthopedic because of my age, 70. I appreciate the link to the trainer with whom your daughter works.

As regards my on-going Physical Therapy and pain relief, as long as I am diligent and continue PT 2-3 x/day, every day, the stretching and strengthening exercises help some with pain relief and mobility, especially mobility. I also take Norco, Robaxin and rely on bi-weekly chiropractic adjustments for relief from pain. Chiropractic has the added bonus of improving my overall well-being.

I am anxious to learn of others with my degree of severity or significant loss of height (I lost 7” in two years).

Good morning, Renee. You and I close to the same age. It’s hard to believe we’re at the point in life where surgery isn’t advisable! When did that happen? I’m sure you feel just like I do that I’m still in my 20s…(in my head! 😅) Now we’re ‘women of age’ with our bodies reacting accordingly!
I’m hoping you find some good answers here among other members with scoliosis and what they’re doing to overcome the challenges. Don’t hesitate to pop into that link I gave you and tag members with their @name.

I’m happy to hear you’re having some relief with the PT and chiropractic care. Another avenue to explore might be deep tissue massage and myofacial release with a licensed massage therapist. Have you tried massage? If nothing else it just feeeeels amazing. 😊

In the fall of 2011, I started having pain on the left side of my lower back. I looked in the mirror and saw that my spine curved to my left side. In the April, 2012 issue of the Mayo Clinic Health Letter there was a major article about adult degenerative scoliosis. It recommended exercise, and painkillers I did not want. I went to my doctor who prescribed physical therapy at Gottlieb Hospital and then went to their fitness center for exercise. A friend referred me to her chiropractor, but after two months I quit because he didn't help.

On Wed. March 17, 2021 I was in the welcome area of a church I was visiting and my left foot suddenly flew out to the left. I fell on my arm and broke my left wrist. I was taken to the Gottlieb ER and spent two more days in the hospital. After three casts were removed, I had four sessions of hand therapy and then 12 sessions of physical therapy. The therapist said that at my age of 84 there was nothing more she could do for me. I found that when I walk with a trekking pole (walking stick) in my right hand, it helps to alleviate the pain.

@reneeksmith My spine surgeon, Jeremy Fogelson, at Mayo is a spine deformity expert and does treat a lot of scoliosis cases. I don't know if 70 is too old for spine surgery. It may depend on a lot of other health issues and if a surgeon is afraid of complications in an older patient. My mom went through parathyroid surgery in her mid 80's, but at that point, it had already caused severe osteoporosis. She was dopey and didn't recover from anesthesia as well. We talked the hospital into keeping her overnight on oxygen and then she was OK. Spine surgery is major surgery with a much longer recovery and rehab.

I know one way deformity happens to older adults is because of compression fractures that can happen because of osteoporosis and the spine can heal with an incorrect angle causing a curvature. I'm just a few years behind you, and still think of myself as a youngster and doing everything I can to prevent another spine issue from happening. I had a cervical fusion 6 years ago. My surgeon told me to maintain core strength to avoid needing his services in the future. So far so good. I would not trust a chiropractor with my neck because I know how easy it was to rupture a bulging disc which I did just by stretching my neck when I was turning my head a little bit, and I heard it pop. Any aggressive force could easily do the same if a disc is weakened.

What helps me a lot is physical therapy and myofascial release to release tight tissue and muscle spasms. You can have a functional scoliosis caused by muscles that pull the spine out of shape. Maybe that is how is begins to develop, and fixing those muscular problems might return better posture. An expert like Dr. Fogelson might be able to say if PT could help or if the resolution would be surgical. The spine certainly can remodel itself and be stuck in a deformity that only surgery could address.

MFR is Myofascial Release Therapy. There is a discussion on MFR that you might find helpful.

Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Have you heard of MFR before?

Hello @reneeksmith. I'd like to add my welcome to Mayo Clinic Connect. I see that @loribmt and @jenniferhunter have both joined and responded to you already!

You will notice that I have moved your post into an existing discussion on scoliosis where others with scoliosis can more easily connect with you and share their experiences as well. You can find your post here:
- Scoliosis - Introduce yourself and meet others: https://connect.mayoclinic.org/discussion/scoliosis-introduce-yourself/

I'd like to bring in members @palmsprings59 and @lifetimepain who may also be able to provide you with some support.

Of the options that could be offered, do you have a preference if your doctor would be open?

Do you suffer from the stiffness of scoliosis?

@carol6 Hello, Carol. I wanted to welcome you to Connect. I don't have scoliosis, but I am a spine surgery patient. I can imagine that scoliosis might limit your mobility and affect your daily living. Do you have anyone who helps you around the house?

My elderly mom developed some curvatures because of spine compression fractures due to severe osteoporosis. Is that a factor for you? Recently, my mom completed a year of Evenity injections to try to improve her condition.