Scoliosis - Introduce yourself and meet others

@ohiogirl that is truly fantastic!

Hello! Im an active 67 year old female but I was 59 when I had my first spinal surgery. My diagnose then was degenerative disc and spinal stenosis. However, where scoliosis has come in was a complication to my S1-T10 fusion 3 years ago. I developed proximal junctional kyphosis and loosening of hardware. Plus sagital imbalance and scoliossis. The good news is just last month at Ohio State Univ I had an additional fusion added.(T4-T10 add in) Jan 2020 I added C3-C7 hardware for my arm pain and numbness due to deterioration of cervical spine. I am still very flexible!! I take care of my own home. Drive my manual trans Camaro, hike, kayak. Really nothing I can't do.

I’m a 60 year old female with scoliosis since early teens. Recently diagnosed with osteoporosis- first routine bone scan. Recently read articles about study in Saudi Arabia where bone scans done on young girls with scoliosis showed osteoporosis. My internist recommendation was start fosomax . Wondering if should wait. Have I had thin bone density since teens?

Hello @charlenei and welcome to Mayo Clinic Connect. That is an interesting study you mention. Can you post a link for members to read?

Are you trying to determine if you should start Fosomax based on the notion that you could've had thin/low bone density since your teens?

Yes , thinking why start fosomax if possibly low density not new, and no proof yet of progression.

Hi- I have had MCTD (akin to Lupus) since 1996. Have always focused on maintaining mobility. I had images taken of my back when I broke 7 ribs/2 vertebrae falling off a horse in Havasupai Falls. But, what I didn't know until then was that I have scoliosis (part at an angle as my back repaired itself), and other degenerative issues in neck and lower back. I went for chiro adjustments when I noted leaning one way or the other, used a foam roller against the wall and did basic yoga. You'd think that it would hurt worse with movement, but relaxing the surrounding soft tissue is huge. I weaned off the oxycodone after 4 months (including having gallbladder out), and am generally just fine. I use 4% lidocaine patches, cool/microwaveable heat, KT Tape (you tube directions) and PT stretches at night and in the morning - including cat/cow/child/cobra yoga, and sciatica movements. I like my posturpedic spring bed with a 3", 3lb topper which offers good support. Pillow between legs. A good book, including isometric moves, is Pain Free by Pete Egoscue, which has lots of info and sample moves. Still try to get a Manual PT, with Rocoabado training to work a schedule out for you. Medicare allows ongoing PT sessions. I take Etodolac 2x/day; Plaquenil and keep a non-inflammatory, non-processed diet and plenty of movement - water exercise, daily walk, etc. Mopping and vacuuming are contra-indicated. https://www.askdoctorjo.com/scoliosis-exercises

Hello Everyone! This is Kate. My original surgery for AIS (adolescent idiopathic scoliosis - you’re all probably familiar with that) was 1975 in Pittsburgh, Pa. I was 13yrs old. I was fused from T 4 to L 1 with the Harrington rod. Around 30 yrs later, I was having low back, hip and leg pain that I couldn’t ignore. Long story short, I elected to go the conservative medical route for treatment. I’ve had epidural injections, median branch nerve blocks, Radiofrequency Ablation of 3/4 lumbar levels bilaterally over the last 17 years. Back when this first stated I went to Minnesota scoliosis & spine research center, and other spine docs and just did a lot of research on it.. I was involved on message boards on yahoo, etc. I am a nurse, major critical care and then went to outpatient surgery because of my pain. I was running an ambulatory surgery center. I did not like the experimental nature of the revision surgeries that were being done and I know and have seen too much over my career.
Now my pain is worsening and I’m not getting the relief anymore from my procedures. I really don’t have the courage to submit to going for revision surgery when the complication rate is 61%. Has anyone here ever used the PEAK Scoliosis Brace for pain relief and improving posture?

Hi Kate,
I’m in a similar condition as you. Fused in 1974 from T3-L4 with one long Harrington distraction rod in the “Dollar sign” position running the length of a double curve and a compression rod on the convex side of the thoracic curve.

I haven’t used that brace you mention but my opinion is that anything that helps you find a “neutral” position for your lower back would reduce your pain. Soft cervical collars do that for neck pain and help the nerves and soft tissues heal. The wrist splints I wear at night stop the pain from synovial cysts and thickening ligaments causing nerve compression of carpal nerves.

How is your overall bone and muscle strength? Are you taking any hormone therapy to help improve bone, muscle and skin tone? I do dozens of small measures daily to help manage the consequences from an aging, extremely long fusion. These include daily walking, stretching that gently lengthens the muscles in my back, ligament stretches in my hips, nutritional supplements, Ca, D, melatonin, C to name a few. I focus on maintaining straight posture while sitting, driving, walking. I have extra mirrors in my house to help me check my posture. A thoughtful eating plan limiting calories to 1200-1600 daily for weight loss and maintaining at 1700-1800, based on NIH low cholesterol weight loss guidelines. I also aim for 50 grams of protein each day for long term energy and to keep from getting hungry.

I agree the risk from salvage surgery to correct flat back or eliminate back pain, which requires various vertebral osteotomies is extremely dangerous. There is no published data on the surgical outcomes, success or failure rates. The small number of known cases spoken of anecdotally by patients and surgeons indicates an enormous rate of patients made worse, or very temporary improvements followed by repeated surgeries with bad results. It is an exercise in futility.

I am a 70 year old female who has never had surgery for my scoliosis. I have an S curve which continues to worsen. However, I continue to have an active lifestyle with pain that doesn't seem to interfere with daily activities. I see a surgeon each year and he suggests delaying surgery as it will severely impact my mobility and flexibility. I do stretches and walk everyday. I get 10,000 steps nearly every day. I am going to continue to keep moving and delay surgery as long as possible. I have been diagnosed with osteopenia. The osteoporosis clinic I go to is urging me to take medication beyond Fosamax. The medications are expensive and I wonder if warranted. The clinic wants to be sure my bones are strong enough for surgery that I may not have for awhile. What do other people with scoliosis take for osteoporosis prevention?

Hi Kate,
My name is Kristen. I am a 52 yr old living with an S shaped curve from adolescence. It is progressively getting worse, also recently diagnosed with osteoporosis in my spine. It has been suggested by the spine surgeon that I will probably have surgery within 5 years, although I currently don’t take anything for pain. An endocrinologist suggested taking Prolia for bone health, then switching to Forteo before my surgery to build up bone, then continue it for 3-6 months after surgery. I am hoping to not have surgery, but don’t know what happen in the future with severity of curve and pain.
I would love to hear from people who have had the surgery and what their experience is afterward.