Adults living with scoliosis, thoracic stenosis

Posted by OctaviaWood @octaviawood, Sep 13, 2012

Searching for Adults living with scoliosis, thoracic stenosis

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

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@lynettegable

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

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Hi Lynette …. I don’t want to poke my nose in where it doesn’t belong, but it sounds to me like the care you have received has been less than good. I don’t know what your situation is, but if you’re able, you might want to consider going to a teaching hospital …. Mayo would be excellent, Cleveland Clinic, Johns Hopkins …… you could do some research on what would be closest to you. I strongly encourage you to get another opinion from people who really have the latest research and techniques available. I can’t imagine what having broken wires inside me would feel like. Please keep us posted.
abby

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@lynettegable

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

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SueE. …… if you had the Herrington Rods, I don’t understand why your ribcage is twisted. It was my understanding that the rods were placed in early enough so that the twisting didn’t happen. Just wondering out loud.
abbt

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@lynettegable

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

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I actually ended up at Mayo. They saved my life and my leg. Surgeon that did original sugery not at Mayo wouldn’t take first knee out by time i got to Mayo i was really sick. VRE and MRSA and my immune system really messed up. They tried everything but my body was like a sponge with infections. Thats why they dont want to put in a hip or other knee. They gad never had a rod get infected with a fusion of this type and the rod had been in for 9 months before it got infectef.

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@lynettegable

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

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Oh my, you really have been through it. You must be in pain 24/7. Do you feel those wires poking at you? How is life for you? Are you able to do the things you want/need to?
abby

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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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@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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