Searching for Adults living with scoliosis, thoracic stenosis

Posted by OctaviaWood @octaviawood, Sep 13, 2012

Searching for Adults living with scoliosis, thoracic stenosis

@lynettegable

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

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I have a lot of limitations but thankful i can do sime things

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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.

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Has anyone started falling due to their scoliosis?

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Can scoliosis contribute to digestive issues like diarrhea?

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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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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

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@edieguinn

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

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As I read all of these stories I realize how very blessed my daughter was when her Pediatrician discovered the scoliosis she has (large “S”), sent us to a good Ortho. who worked with a woman from Germany who was an expert in P.T. for that. My daughter did those exercises 2x a day (there were 10 different exercises) from the time she was 9 or 10 until she was 18. She still has the S, but just as he told us, once her bone plates stopped growing, it would no longer change. She was right on the edge of rods or no rods, and he opted for the exercises to strengthen her stomach and core.
I wish so many of you who are suffering with this would have been able to have access to this type of care. I can only imagine how painful and uncomfortable it is, and I’m so sorry.
Blessings,
abby

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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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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 (

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@kpete65

Has anyone started falling due to their scoliosis?

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I use crutches and have had scoliosis all my life and was never told by my doctors that my falling was contributed by my scoliosis but now in my 60’s I do find that my balance is off and when I spoke to my doctor he still does not contribute the falling to my scoliosis

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@kpete65

Can scoliosis contribute to digestive issues like diarrhea?

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KPETE65 I have digestive issues and have see a gastroenterologist who has never linked my scoliosis to getting digestive problems

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@edieguinn

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

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amberpep I was given PT until I stopped growing but no doctors or PT ever made my issue of my scoliosis

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