Scoliosis - Introduce yourself and meet others

Let's talk about living with scoliosis.
As a community moderator of the Bones, Joints & Muscles and Spine Health groups, I've noticed several members talking about scoliosis, but those discussions were scattered throughout the community. I thought I would start this discussion to bring us all together in one place.

Get comfortable in your favorite spot, grab a beverage of your choice, and let's chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Spine Health Support Group.

Profile picture for reneeksmith @reneeksmith

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?

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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?

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Do you suffer from the stiffness of scoliosis?

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Profile picture for carol6 @carol6

Do you suffer from the stiffness of scoliosis?

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@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.

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My surgeon has recommended spinal reconstruction surgery to correct scoliosis, kyphosis, and spondylolisthesis, with fusion of T1 through S1. I'm 67 and scared to death. Has anyone else faced a similar situation? Outcomes, suggestions appreciated.

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Profile picture for celticpat @celticpat

My surgeon has recommended spinal reconstruction surgery to correct scoliosis, kyphosis, and spondylolisthesis, with fusion of T1 through S1. I'm 67 and scared to death. Has anyone else faced a similar situation? Outcomes, suggestions appreciated.

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I was fused in May, T4 through S1. It’s a long recovery but so far going well. I was also terrified, but I’m glad I did it. I’m 58.

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Profile picture for celticpat @celticpat

My surgeon has recommended spinal reconstruction surgery to correct scoliosis, kyphosis, and spondylolisthesis, with fusion of T1 through S1. I'm 67 and scared to death. Has anyone else faced a similar situation? Outcomes, suggestions appreciated.

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I had a spinal fusion (T2-L2) in 1977, at the age of 19. Definitely a different scenario and medicine has advanced greatly since then, but I was wanted to state that I have not had any issues with the fusion. Physical therapy post-op and throughout my life has been a great factor to my successful outcome.

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Profile picture for celticpat @celticpat

My surgeon has recommended spinal reconstruction surgery to correct scoliosis, kyphosis, and spondylolisthesis, with fusion of T1 through S1. I'm 67 and scared to death. Has anyone else faced a similar situation? Outcomes, suggestions appreciated.

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I can understand your concern but the below post in certainly encouraging. I I to have scoliosis kyphosis and spondylosis, these options have not been presented it to me but it certainly gives me something to think about. I just had a C5-6 fusion and the hardware from the 6-7 -7 removed and my pain is worse. I am also fused at the lumbar 4-5, 5 Si and did great but now have bulging discs above that. Do you mind me asking you where you would have this done? I hope you’re able to decide what to do sometimes I think not knowing what to do is the worst part. I amwishing you well and look forward to seeing what you do. Oh by the way I’m just a year older than you so I’m 68 and in good health other than my spine.

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Profile picture for klsteffes @klsteffes

I was fused in May, T4 through S1. It’s a long recovery but so far going well. I was also terrified, but I’m glad I did it. I’m 58.

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Thank you for your encouraging story. I'm glad things are going well for you! Have you noticed any major changes to your lifestyle since the surgery?

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Profile picture for leigh17 @leigh17

I can understand your concern but the below post in certainly encouraging. I I to have scoliosis kyphosis and spondylosis, these options have not been presented it to me but it certainly gives me something to think about. I just had a C5-6 fusion and the hardware from the 6-7 -7 removed and my pain is worse. I am also fused at the lumbar 4-5, 5 Si and did great but now have bulging discs above that. Do you mind me asking you where you would have this done? I hope you’re able to decide what to do sometimes I think not knowing what to do is the worst part. I amwishing you well and look forward to seeing what you do. Oh by the way I’m just a year older than you so I’m 68 and in good health other than my spine.

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Hello, leigh17. Thank you for posting. I had been looking at Mayo Jacksonville, but they were not accepting any new spine patients! So I have been working with a surgeon in New York City, said to be the best place to go for spinal reconstruction surgery. My dilemma is: Will I be better or worse after having this surgery? I just don't know.

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Profile picture for celticpat @celticpat

Hello, leigh17. Thank you for posting. I had been looking at Mayo Jacksonville, but they were not accepting any new spine patients! So I have been working with a surgeon in New York City, said to be the best place to go for spinal reconstruction surgery. My dilemma is: Will I be better or worse after having this surgery? I just don't know.

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Yes I forgot but they aren’t taking any new spinal patients at Mayo. I’m glad that you’re working with someone with a fabulous reputation and that you feel comfortable with, as comfortable as you can in this type of situation. I can certainly understand how you feel I know I would probably be feeling the same way. I wish I could give you more encouragement I think in this type of situation and being in that much pain I would probably go ahead but it’s easier said than done. Have you checked any of his past patients for their reviews?

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