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.

Hello, I’m Bob 62 y.o. with right thoracic, left lumbar double curve scoliosis. My last measurement in 2017 revealed my curve increasing and at 63 degrees. I am have attending yoga classes for over a year. Last week the instructor stated that I may be developing a third curve in the cervical spine area. I never heard of this before. My Orthopedic has retired. I l live on the southside of Chicago. I can’t get to Mayo until the summer. Any recommendations

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@bobwieler

Hello, I’m Bob 62 y.o. with right thoracic, left lumbar double curve scoliosis. My last measurement in 2017 revealed my curve increasing and at 63 degrees. I am have attending yoga classes for over a year. Last week the instructor stated that I may be developing a third curve in the cervical spine area. I never heard of this before. My Orthopedic has retired. I l live on the southside of Chicago. I can’t get to Mayo until the summer. Any recommendations

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Hello @bobwieler, welcome to Connect. You may notice I moved your discussion and combined it with the existing "Scoliosis – Introduce Yourself" discussion. I did this so the many members actively discussing scoliosis would have a chance to see your message and respond. @bobwieler, how are you doing with the side-effects of your scoliosis? It sounds as though you are quite active, does that help your pain? Did you notice you were having more issues before your instructor mentioned you may be developing a new curve?

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@JustinMcClanahan

Hello @bobwieler, welcome to Connect. You may notice I moved your discussion and combined it with the existing "Scoliosis – Introduce Yourself" discussion. I did this so the many members actively discussing scoliosis would have a chance to see your message and respond. @bobwieler, how are you doing with the side-effects of your scoliosis? It sounds as though you are quite active, does that help your pain? Did you notice you were having more issues before your instructor mentioned you may be developing a new curve?

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Hello Justin, Thanks for moving my discussion to a spot where people can respond. I am active, but have been slowed down by heart Afib. Took over 3 years to diagnose. Low level case, could not see any irregularities on several EKGs. Taking medication, feeling much better, able to take walks, and do yoga. Noticed about a year ago the left side of my back in the center along the left side of spine becoming increasingly painful. Also headaches began occurring about the same time. I also noticed my breathing becoming very difficult. (I have had shortness of breath since I was young ) Instructor asked if I had any headaches and if I did were they located on the left side of my head. Yes I replied to both. I now do poses to help support better breathing and decrease muscle stiffness and started new poses for the cervical area. Pain does decline momentarily but returns in a day. Aspirin is not working like it used to. Sorry about the slow response. Last thing; Spine curve last measurement was September 2017, 63 degree curve.

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My daughter has severe scoliosis and we were considering spinal fusion, but then my mom saw the VBT procedure on the news and I would like more information. She is 15-almost 16 with an S shaped curve 52 degrees on the top and 30 on the bottom curve.

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Hello...
I’m wondering if there’s anyone out there that has severe scoliosis. Anyone with Harrington Rods?
I’m 50 now, but at age 10, a family friend noticed that my shoulders were not equal. So mom took me to the family dr, who sent me to a specialist, who operated on me like two weeks later. My entire spine is fused. I have not grown in my torso since the surgery.
I didn’t have any pain until I was pregnant. And the pain has just gotten worse ever since.

I’d love to hear that I’m not the only one who has had this happen to them.

Thank-You!

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@trish70

Hello...
I’m wondering if there’s anyone out there that has severe scoliosis. Anyone with Harrington Rods?
I’m 50 now, but at age 10, a family friend noticed that my shoulders were not equal. So mom took me to the family dr, who sent me to a specialist, who operated on me like two weeks later. My entire spine is fused. I have not grown in my torso since the surgery.
I didn’t have any pain until I was pregnant. And the pain has just gotten worse ever since.

I’d love to hear that I’m not the only one who has had this happen to them.

Thank-You!

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Hi @trish70 and welcome to Mayo Clinic Connect. You'll notice that I moved your message to this main discussion about scoliosis in the Spine Health group so that you can connect with other members like @lilypaws @veteranspouseinpain @rarelybees2889 @sharon2000 @muffincat @beryl and others.

You may also be interested in these related discussions:
- Scoliosis: In pain morning noon and night https://connect.mayoclinic.org/discussion/in-pain-morning-noon-and-night/
- Scoliosis and Chronic back pain https://connect.mayoclinic.org/discussion/chronic-back-pain-2c72ae/
- Harrington Rod and lower back pain https://connect.mayoclinic.org/discussion/harrington-rod-and-lower-back-pain/
- Scoliosis surgery: Harrington rod placement and spinal fusion https://connect.mayoclinic.org/discussion/i-had-surgery-for-scoliosis-in-1973-which-included-harrington-rod-placement/
- Harrington rods and complications https://connect.mayoclinic.org/discussion/harrington-rods-and-complications/
- Scoliosis & back braces, devices https://connect.mayoclinic.org/discussion/scoliosis-2/

Trish, do you have Harrington rods? How do you manage the pain?

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@trish70

Hello...
I’m wondering if there’s anyone out there that has severe scoliosis. Anyone with Harrington Rods?
I’m 50 now, but at age 10, a family friend noticed that my shoulders were not equal. So mom took me to the family dr, who sent me to a specialist, who operated on me like two weeks later. My entire spine is fused. I have not grown in my torso since the surgery.
I didn’t have any pain until I was pregnant. And the pain has just gotten worse ever since.

I’d love to hear that I’m not the only one who has had this happen to them.

Thank-You!

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i to had it at a young age of 15, back in 1976. it was done at Chicago Children's Memorial. I had a 48 degree curve, in the thoracic region. i am now 59 yrs. young have always had neck pain, and hip pain from the bone graft, back around the age of 40 I started having alot of low back pain. been in pain management for yrs. I got cut off of pain meds, I feel your pain trust me I simply don't know what to do about it I stopped going to my pain Dr. if they can't treat me with every day pain, they will NOT get another dollar from my insurance. HELP ME I will not have any more poking, or prodding, or surgeries

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@lisa7777

i to had it at a young age of 15, back in 1976. it was done at Chicago Children's Memorial. I had a 48 degree curve, in the thoracic region. i am now 59 yrs. young have always had neck pain, and hip pain from the bone graft, back around the age of 40 I started having alot of low back pain. been in pain management for yrs. I got cut off of pain meds, I feel your pain trust me I simply don't know what to do about it I stopped going to my pain Dr. if they can't treat me with every day pain, they will NOT get another dollar from my insurance. HELP ME I will not have any more poking, or prodding, or surgeries

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Consider CBD capsuals.

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@lisa7777

i to had it at a young age of 15, back in 1976. it was done at Chicago Children's Memorial. I had a 48 degree curve, in the thoracic region. i am now 59 yrs. young have always had neck pain, and hip pain from the bone graft, back around the age of 40 I started having alot of low back pain. been in pain management for yrs. I got cut off of pain meds, I feel your pain trust me I simply don't know what to do about it I stopped going to my pain Dr. if they can't treat me with every day pain, they will NOT get another dollar from my insurance. HELP ME I will not have any more poking, or prodding, or surgeries

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I’m fused S1-T2, C4-5-6. I have pain every day all day. Sometimes puts me in the hospital on a pain med drip until it unclenches. I have found that exercises each specific muscle group in my back helps immensely. I have big rubber bands that I use. I also do the core (Tummy, butt, Kegel). I do them four or five times a day and use Voltaren cream. I’m surviving!

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@jackl

I’m fused S1-T2, C4-5-6. I have pain every day all day. Sometimes puts me in the hospital on a pain med drip until it unclenches. I have found that exercises each specific muscle group in my back helps immensely. I have big rubber bands that I use. I also do the core (Tummy, butt, Kegel). I do them four or five times a day and use Voltaren cream. I’m surviving!

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Yikes! Do you normally take any anti spasmodic medication like cyclobenzaprine or baclofen? I found the latter works better, doesn’t make me drowsy and less side effects such as dry mouth. That’s a lot of fusions! My neck is fused at same levels.

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