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.

My surgery was done at Mayo- Rochester MN.

My Dr is extremely conservative and has just recently lifted some of the restrictions. I’m not allowed to bend or twist until the one year mark. The short answer is yes, however part of that is due to restrictions that will be lifted.

I’m hoping to return to road biking(pedal) this summer and downhill skiing next season. As of now I’ve been mainly walking and snow showing. I’m able to do both with no pain and I would have had pain before. I can easily do both for more than 3 miles.

Daily things are difficult because I’m not allowed to bend forward. That will change in May.

I’m happy to share what ever you’d like to know. I had tons of questions too and couldn’t find anyone to ask.

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Profile picture for nlback22 @nlback22

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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Hello, nlback22, thank you for responding. Your fusion was very similar to what is proposed for me. I'm glad you are doing so well. If I had 19-year-old bones (oh, if only!), I don't think I would be as worried as I am now. Osteoporosis is a real game-changer! However, I am encouraged by your story.

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Profile picture for klsteffes @klsteffes

My surgery was done at Mayo- Rochester MN.

My Dr is extremely conservative and has just recently lifted some of the restrictions. I’m not allowed to bend or twist until the one year mark. The short answer is yes, however part of that is due to restrictions that will be lifted.

I’m hoping to return to road biking(pedal) this summer and downhill skiing next season. As of now I’ve been mainly walking and snow showing. I’m able to do both with no pain and I would have had pain before. I can easily do both for more than 3 miles.

Daily things are difficult because I’m not allowed to bend forward. That will change in May.

I’m happy to share what ever you’d like to know. I had tons of questions too and couldn’t find anyone to ask.

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Wow! I'm so impressed that you can already snow shoe 3 miles without pain! That's amazing! I'm curious as to how extensive your surgery was, and your age. I've read about the bending and twisting restrictions, and can only imagine how that would affect my daily life. But, as my conditions are degenerative, how bad might I be if I did not have surgery?
I'm so appreciative to have someone with a similar experience to communicate with...thank you!

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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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Oh, I see you already gave me this info! Yes, your situation is quite similar to mine. Who was your surgeon?

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Profile picture for celticpat @celticpat

Hello, nlback22, thank you for responding. Your fusion was very similar to what is proposed for me. I'm glad you are doing so well. If I had 19-year-old bones (oh, if only!), I don't think I would be as worried as I am now. Osteoporosis is a real game-changer! However, I am encouraged by your story.

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It is interesting that you and a few others are having their backs fused to S1. I wish that my back would have been! My lumbar spine L2- S1 is the only area where I have problems. The problems are, in part, due to aging (degenerative disc disease), and other factors--shifiting of vertebrae due to the scoliosis, buldging discs, and spinal stenosis. The pain I currently have is increasing, and surgery for that area may be in the future. I also have osteoporosis so from a surgery standpoint you don"t want to delay your surgery. You just need to make certain that you go to a top surgeon on the field.

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Profile picture for celticpat @celticpat

Hello, nlback22, thank you for responding. Your fusion was very similar to what is proposed for me. I'm glad you are doing so well. If I had 19-year-old bones (oh, if only!), I don't think I would be as worried as I am now. Osteoporosis is a real game-changer! However, I am encouraged by your story.

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I also have osteoporosis. It’s still possible!

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Getting surgeries done end of march for my scoliosis.

Curves 107 & 75.

I imagine quite larger than most. Just wanted to say hi and if anyone has gone through the vertebral column resection (VCR) surgery and/or been fused from ~T3-L4.

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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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How long after were you able to do daily things on your own? Im 29, and getting ~T3-L4 fused later this March. Curves are 105 and 75.

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My surgery was 2 days over a 3 day period. I was in the hospital for a total of one week. I was able to take care of most of my personal needs after about 3 weeks and returned to work after about 6 weeks. I was able to walk 2 miles one month after my surgery and 3 miles 6 weeks post surgery. 5 months post surgery I was over 6 miles.

Most things I can do by myself, however some are more difficult than before. This is largely due to my restrictions of no bending or twisting until I hit the one year mark. My husband and/or mom pretty much stayed with me or nearby for the first 3-4 weeks.

I'm confident I'll return to pre surgery activities, perhaps with some modifications. I hope this helps, and good luck. Follow doctor orders!

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Profile picture for mlopez01 @mlopez01

Getting surgeries done end of march for my scoliosis.

Curves 107 & 75.

I imagine quite larger than most. Just wanted to say hi and if anyone has gone through the vertebral column resection (VCR) surgery and/or been fused from ~T3-L4.

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I went through fusion on L4-L5 is been almost 6 months the pain and the tingling came back not easy to deal with this I’m taking anti inflammatory and muscle relaxer and pregablin pain isn’t going away😟

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