Searching for Adults living with scoliosis, thoracic stenosis
Searching for Adults living with scoliosis, thoracic stenosis
I was diagnosed with scoliosis around 4 months ago. I have a 40 degree "s" curve. I was sent to a specialist about it and basically all he said was that I had to wait and come back in 6 months. That was 3 months ago and I've been experiencing back pain daily and didn't know if that was because or just regular scoliosis pains or the curvature getting worse. Any advice?
Hi @aeb1957 and welcome to Connect.
Your message is very brief. Can you tell us a bit more about you? Then I can help connect you to people and conversations, like @annieecruz @mieke for example who also live with scoliosis.
In the meantime, I thought this Mayo Clinic Q and A would be of interest. http://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-for-adults-affected-by-scoliosis-treatment-based-on-severity-of-symptoms/ It talks about adults with scoliosis, and treatment based on severity of symptoms. @aeb1957 @annieecruz @mieke how do you manage your scoliosis?
Does someone with adult scoliosis in this group have experience with Schroth therapy?
Hi there, my name is Alanna, and I'm a 34-year-old woman who was diagnosed with scoliosis at the age of 15. In the first years following my diagnosis, I was advised by both my family doctor and an orthopedic surgeon that my scoliosis should not cause any pain, and that it shouldn't interfere with my functioning or with leading a normal life. Unfortunately, over time that counsel has proven to be anything but accurate. Throughout my late teens and my twenties, I felt mostly okay. My gait felt awkward due to the unevenness of my hips, and I felt some back pain while exercising, but I was still ABLE to exercise and was pain-free most of the time. Since I turned 30, though, things have changed dramatically. I now have burning pain in my back when I sit for an extended period, but the worst part is my lower body. My right hip juts out so unnaturally that the angle from my hip to my knee is very steep and puts a ton of pressure on my knee. Same with the angle from my knee to my ankle. My right leg aches and throbs incessantly; all of the muscles are extremely tight (I feel like I am never able to stretch them out to the point where they feel close to normal), and my joints throb. I know some people find that walking helps alleviate their scoliosis pain, but for me, being on my feet (anything that puts those unusual angles between the joints of my right leg into play) in any form, be it standing, walking, running, climbing stairs -- all of it makes the pain worse. This has meant that my once active lifestyle has become very circumscribed. I can't go for walks; I tend to want to avoid standing activities I enjoy, such as cooking; going out to run errands feels like too much bother because of the pain I know it will involve . . . I end up staying home, isolated, much more due to my pain. Even inside the house, I'm more likely to be lying down than in any other position, since sitting and standing both hurt. As I mentioned, I am only 34. The prospect of this reality persisting for the rest of my life is very difficult for me to accept. Because of my inability to take part in any kind of weight-bearing activity, I am especially concerned about loss of bone density and risk of osteoporosis as I get older. Doctors still tell me that scoliosis shouldn't cause pain, leaving me feeling very stuck and longing to find someone who can help me. I know surgery can be quite risky, yet I feel I'd be willing to try almost anything to regain some of my lost mobility and reduce my pain level.
Is the definition of scoliosis still a 20 percent discrepancy from a straight line? This medical definition may have kept me from knowing that my estimated 10 percent discrepancy was likely related to a life-long tendency to pull muscles, joint stiffness especially in my lower back, with more frequent injuries from accidents and over use on just one side, from head to toe. My first symptoms were in adolescence, beginning with a stiff and sore back, a maintenance issue that I minimize with stretching (yoga and pilates), swimming, and sleeping on my back with my knees elevated. In college (and again in my forties with an MRI), doctors measured my leg length, but found no discrepancy. In my thirties an orthopedist recommended PT and balancing my genetic flexibility with strength building exercises. Swimming, aerobics (low impact), and lifting light weights helped to "straighten" the "short" side. My fifties brought yoga to my work place, and a traditional form of Pilates that actually worsened back pain. [Only in my sixties, when I again tried Pilates, and an evolved method of teaching, in addition to yoga, did I find that Pilates helped.] Also in my fifties, an orthopedist expressed surprise that I did not know about my curvy spine. He showed me an x-ray of my back and what I describe now as a "minor" scoliosis, about ten percent. Over time, I understood that this "shortened" side, is the same length as the other side, but appears shortened because of a curvy spine that tilts body parts above and below, resulting in a "curvy" alignment, not just a curvy spine. One measure for me as to how well I am managing to maintain the alignment of my body parts, as straight as possible, and the flexibility of my joints and the strength of my muscles, is standing with flat feet, bending my knees halfway, and observing whether my knees are in the same place with respect to my feet, or if one is turning inward -- it could be outward for someone else -- it just depends. And even if your knees are in the same place with respect to your feet, as mine are now, consider whether you feel more pressure on one joint or another. Hope this helps just one other person.
Hopefully you will have lots of replies, but if not, I do know of a man born about 1970-73, who also had this surgery; when I last saw him it was several years ago, and he seemed to be doing quite well in both his life and career.
I can't find anyone either hoping will on this site as I've experienced a lot of problems. Plus I have hip dysplasia on that leg plus a tronchanteric fracture when the rod was removed due to infection. Tried to fix it with plate and wires have now broken all wires and never healed
I do have constant pain and an tired of taking pain meds. I do have an appt this week at Mayo pain clinic so praying they can have some suggestions. Would be interested in a pain stimunlator they put in your back but they are afraid to because of my high risk for infection. I have had 13 different ones. They send me for testing my immune system but nothing showed up
In response to the question about my "twisted ribcage"....well, it is for real! The rods were not put in to stabilize anything other than the fused spine during the fusion and healing process only. Back in 1973 they did not even consider what to do with the rib problem. I believe in the years since then, they are "fixing" that twist as well during surgery. BTW, my before surgery curves were quite severe.
Has anyone started falling due to their scoliosis?
Can scoliosis contribute to digestive issues like diarrhea?
Well I am NEW to this site, but finding it is a Godsend! Diagnosed w/ S curves, scoliosis at age 12, and fused top to bottom, with bone from my hip, no rods. Until age 55 I led a VERY active,healthy life playing competitive tennis and boating with my husband. Then doc said I needed a total hysterectomy. I asked for minimally invasive; he said he would opt for open, more invasive. How I regret that! 6 weeks of reclining to recover, losing core muscles, and I began having severe back pain that has continued since...13 years!.....sometimes excruciating. MRI indicates a pseudarthrosis....translated-"failure of the fusion." The radiologist points to the spot where the nerve is impinged. Tried neural root ablation and was SO hopeful, but to no avail. Have consulted with many docs all over U.S. Surgery prognosis is 50/50 and could end up much worse. Tried P.T., massage, facet injections, prolotherapy, you name it! Now on Fentanyl 100, Oxycodone15 and Cymbalta 60. Now the DEA is pressuring my pharmacy to refuse dispensing meds due to substance abuse! Not mine, but abusers. My pain mgt doc describes me as her most compliant patient! So the only thing that helps me play with four grandchildren is in danger of being denied! All info appreciated! Including what helps YOUR PAIN. Thanks much! Barbara
Have severe scoliosis-76 degree curve in lumbar area. Also spinal stenosis and nerve damage in my legs caused by the spine. Surgery isn't an option for me. I also have osteoporosis. Have avoided pain meds. I have script for percoset but Leary about using it. I just do what I can on a given day. I don't plan too many things. Distraction is the best for me. It's not easy but this is something I have to live with. I see myself eventually in a wheel chair. Doing the most I can, while I can which for most people isn't much. Stay uplifted. Don't let depression sink it