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Adults living with scoliosis, thoracic stenosis

Spine Health | Last Active: Dec 12, 2023 | Replies (52)

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@barbara94

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

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Replies to "Well I am NEW to this site, but finding it is a Godsend! Diagnosed w/ S..."

Hi -- my hysterectomy was related to other surgery, and was performed in a closed operation with a da Vinci. I was up and walking within 12 hours, and actually walked out of the hospital, much to the distress of my nurse who was trying to find a wheelchair I did not need. This was far less incapacitating than any other surgery I have experienced, and it was the only "major" surgery, other than childbirth. I chose this surgeon, who chose my hospital, after six months of research (in 2008). He was one of five doctors I interviewed in as many hospitals, three of them women, and he was the furthest from my home. One of the women I interviewed recommended an open surgery; she was not trained in closed surgeries, said she had not had time to be trained, and did not recommend one versus the other. Now her hospital is trying to advertise itself as the center for such minimally invasive surgeries! If I were required to have the same surgery again, I would choose the same doctor, and again a closed, minimally invasive surgery, but I would opt for a larger hospital, not the regional affiliate that he thought I would like better because I could have a private room. In all, I made three trips to see him, including the surgery. My only regret in choosing a surgeon and hospital so far from home, was using a public restroom less than 24 hours after surgery. Next time, I would stay another day before returning home.

At the time I was unaware that my chronic back pain was related to a mild scoliosis (