Adults living with scoliosis, thoracic stenosis

Posted by OctaviaWood @octaviawood, Sep 13, 2012

Searching for Adults living with scoliosis, thoracic stenosis

@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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@colleenyoung

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?

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Hi Colleen,
I have been searching everywhere for any med journal papers or data on what occurs when growth rods are inserted into a child (that is still growing,) and the growth rods are subsequently not extended as per standard process (every six months – left for over 3 years)

I was wondering if you are aware of any such info or could suggest where I could look for it please?
Thank you
Linda

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@lhoward

Hi Colleen,
I have been searching everywhere for any med journal papers or data on what occurs when growth rods are inserted into a child (that is still growing,) and the growth rods are subsequently not extended as per standard process (every six months – left for over 3 years)

I was wondering if you are aware of any such info or could suggest where I could look for it please?
Thank you
Linda

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Hi Linda, you’ll find resources shared with you in the discussion you started here:
– What occurs if Harrington rods aren’t extended? https://connect.mayoclinic.org/discussion/what-occurs-if-harrington-rods-arent-extended/

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I have stenosis in 3 places, also a large curve that was never diagnosed and several disks are ruptured or are bone on bone. I was also told one of the bones off the spine is broken. I am almost 72 and pacemaker dependent. A 5 hour robotic surgery was recommended, any feedback?

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@judysavage

I have stenosis in 3 places, also a large curve that was never diagnosed and several disks are ruptured or are bone on bone. I was also told one of the bones off the spine is broken. I am almost 72 and pacemaker dependent. A 5 hour robotic surgery was recommended, any feedback?

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Who recommended the robotic surgery? I am 83 with degenerative scolosis, degenerative disc disease, 0steoporosis, spinal stenosis, and broke C-1 in my neck 16 years ago! I have a lot of pain, but find that PT helps to some extent. I recently had foot surgery to straighten a hammer toe, and it has healed nicely and no more pain in that foot!!! Don't know if I would be able to recoup from back surgery! Am interested in what you decide

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