Scoliosis - Introduce yourself and meet others

I'm an 83-year-old female who had been physically active until it reached the point where I can exercise only in the swimming pool. T.he entire length of my spine is very, very arthritic with kyphosis and scoliosis. For several years now my left-leaning scoliosis has been putting pressure on my left SI joint. In July 2020 a Pain Management doc at Mayo tried neuroablation on the SI, but the pain relief lasted for only 5 months. The position and angle of may scoliosis made a trial with a spinal cord stimulator a flop. I'm now in the process of communicating with a neurosurgeon at Mayo about the possibility of fusing the SI joint. Here's hoping!

Your post didn't mention if you had ever had surgery before. I am impressed that you have are 83 and still exercise in the swimming pool. I hope Mayo can have a solution for your pain.

Hi Kristen, I am a 57 year old female also living with an S shaped curve from adolescence (although not discovered until I was an adult). I have maintained an active lifestyle, although the pain is progressing. Five years ago I would have said "I can live with this". I still can, but not if the pain continues to progress at this rate. I am only taking Aleve for the pain and don't want to advance beyond that.

I've also been diagnosed with osteoporosis in my spine and I'm being told I should have the surgery sooner than later or I run the risk of no longer being a candidate. I am currently taking Tymlos (similar to Forteo) to strengthen my bones before a long fusion (T2 to S1). I originally was planning the surgery for September 2021, but my bone density after 4 months of Tymlos was still too low. They now want me on the Tymlos for one year prior and one year after the surgery (now planning for April 2022).

Given the progression, my greatest fear is that my bone density will not get to where it needs to be for the surgery. Close behind this fear, is what if it does and I have the surgery and what my life will be like after that. I haven't been able to find anyone with a long fusion close to my age that had an active lifestyle.

I feel conflicted because I fear both not being able to have the surgery as much as having the surgery and experiencing a significant change in my lifestyle.

I know that I'm not being responsive to your inquiry to find someone that has had the surgery. I wish you luck and would be interested in hearing more about your journey.

I have osteoporosis and scoliosis, among other joint/bone things. In 1982 I had 2 Harrington rods fused into my lumbar spine. They didn't help, in fact one broke in half. 1994 - I had additional 6 screws inserted. Didn't help. Pain off the charts. October 2019, I had a Nevro pain block device implanted; a small implant (about 1"x1-1/2"x1/8") in lower left back with electric pulses that are received by 2 wires on either side of my spinal cord. They block pain signals from reaching my brain. Works! First time in 60 years my back doesn't kill me. Prolia is working. I don't have what you do, but I can relate to your pain. I would ask doc about pain implant. My scoliosis is side-to-side and front-to-back. I've included a slice of an MRI.

Hi Ohiogirl. If I'm understanding you correctly you are fused from T4 to S1. Is that correct? and you are still flexible? I'm facing a T2 to S1 fusion and I'm trying to understand what life will be like after that and if I will be able to continue my activities (hiking, biking, downhill skiing....) Are you willing to share more information?

Hi, I am a very lucky woman. When I was a teen, 12 or 13 years old, it was discovered that I had scoliosis. Our pediatrician referred me to John Moe an orthopedic dr. in our city of Minneapolis MN. (My first lucky break.) After several visits it was decided that I would have spinal fusion to straighten the curve in my upper spine. I believe that it was during the time before the surgery that Harrington was inventing and perfecting the rods that would be used to replace the bone fusion operation the was first discussed. (My second lucky break.) I understood only later that Dr. Moe had availed himself to work with Mr. Harrington and learn a procedure for implanting the rods on a crooked spine. (My third lucky break.) I believe that it was 1960 or thereabouts when I had the surgery. I wore a heavy cast for months and a walking cast for a few more months. The casts were of real plaster back then, not the lightweight fiberglass casts of today. I was the second person to have this operation, the first was a girl from Chicago who had had surgery just before mine and shared the room with me at Fairview Hospital. In 1983 or 84 while living in Kansas I received a follow-up questionnaire from an entity, nameless to me now, asking about my health and life in the years since the surgery. My answers were positive. I consider myself very lucky because I had the perfect doctor, the inventive Texan who crafted the rods in time for me to have a normal active future, and because my life has been free of the problems that are caused by a spine that twists and bends in contradiction to a more normal anatomical alignment. I am indeed a Lucky woman.

Hi,my name is Diana Rowland & I am from Helena, Ala. I have severe scoliosis compounded by arthritis. Nothing seems to help with the pain. I have an implanted stimulator,have gone to physical therapy, had one back surgery, 4 blocks, & have taken a variety of pain medications & yet the pain is always with me. One surgeon says I am too old for more surgery (74). I don’t know where that leaves me. What I do know that surgery is worth the risk to me. I am open to anything that relieves the pain.

Hello @bhamdlr and welcome to Mayo Clinic Connect. I can empathize with being open to anything that could potentially ease/relieve your pain after all you have been through.

I'd like to bring in members @klsteffes @lifetimepain @steeldove and @djs51 who may be able to share some of their experiences with you to see if there are other options for care that you haven't yet been presented or maybe considered.

What type of surgery did you have?

I'm looking at surgery in April 2021 (T2 to S1 fusion). My pain is tolerable, but my Dr wants to do it before medical issues make it no longer an option...I'm 57, but I have osteoporosis. I don't know what your physical health is, but my Dr. told me it has as much to do with your health as it does your age. I have talked to at least one person who had the surgery in her 70's. Maybe consider a second opinion.

I find the best thing to help me with pain is regular exercise, focusing on the core. I notice immediately if I miss a week or two. I also invested in a bed that is adjustable. I sleep in the "zero gravity" setting. Basically my feet and head are elevated. It took some time getting used to sleeping primarily on my back, but it has helped significantly. The bed was pricy, but worth it.

Best of luck and I hope you find relief!

I am 70 years old and have not had surgery for a significant S curve. I spend at least 15 minutes every morning stretching and doing calisthenics. I do sit-ups and yoga poses like plank, cobra, downward facing dog, child's pose. I walk for about an hour every day and get about 10,000 steps each day. I also try to meditate laying on my back with legs propped against the wall for 20 minutes each day. My physical therapist suggested putting 2 tennis balls inside a sock. I place these socks where I have tightness and pain while I meditate. I find it keeps me flexible and lessens pain. I also lay on my back while sleeping and prop up my feet. I find staying active really helps.