Adults living with scoliosis, thoracic stenosis

Posted by OctaviaWood @octaviawood, Sep 13, 2012

Searching for Adults living with scoliosis, thoracic stenosis

@alannaj

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.

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alannaj I have been living with scoliosis my whole life without the pain (except if I sit to long than it get uncomfortable but once I put a pillow on my back I feel fine) In fact I didn’t know I had scoliosis until one day I looked in the mirror and notice this unusual curve to my hip. If your orthopedics doctors still say that there is no reason for the pain. Maybe you should look further to what other ways may be causing you the pain. I realize that your scoliosis is the most obvious answer but maybe it is not the answer now. I suggest going back to your main doctor and explore other causes. At this point you are obviously at an impass and exploring other areas may help.

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@kaylynrenae16

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?

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Hi there …. My daughter, who is now 45, was diagnosed with an S curve scoliosis when she was 9. Our Orthopedist at the time had a Physical Therapist working for him, from Germany, who was absolutely wonderful. We went in every month and she would give my daughter another exercise to do 2x a day … within a few years she had a series of 12 different exercises to do twice a day. They were to strengthen her abdominal muscles and core muscles to hold the S from getting any worse, thus making her have to have the Herrington Rods. Well, God bless my daughter and that P.T. because while Jen still has the S scoliosis, it never got any worse … she’s gone on to have 2 children, and from the front, you’d never know she had this deformity.
Perhaps strengthening your core, very faithfully (I sat with her every time), would prevent it from getting worse. Good luck.
abby

Liked by safetyshield

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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.

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@alannaj

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.

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Welcome, @alannaj; chronic pain can be so frustrating and debilitating!

You might be interested in the discussion going on in the Chronic Pain group called “Scoliosis and Chronic back pain”
http://mayocl.in/2eoHr4z
I’m so glad you’ve already met @safetyshield and @rareeby. I’d also like to introduce you to @vickiekay, @kathyv, @edieguinn, and @amberpep, and hopefully they can offer more insight into scoliosis and related pain.

Have your doctors suggested you seek a second opinion, or surgery? Have they recommended other tests to rule out pain from scoliosis?

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@rareeby

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.

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Sounds like your plan is what I do. My doctor also told me that he thought I wouldn’t be able to stand as straight as I do. Exercise and flexibility is certainly the key

Liked by kayelle

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@rareeby

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.

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I don’t know about the 20% discrepancy. When my daughter would see her Orthopedist, he held a tape measure onto the back of her head and let it drop straight down to see if there had been any change. Fortunately, thanks to the German P.T. there was not any …. she was right on the borderline of getting the Herrington Rods. He said that once she was fully grown and her bones had stopped growing at the bone plates, she would be in the safe zone. That seems to have held true for her. She has no pain, at least that I know of, regarding the scoliosis, although from the side and the back you can see it …. just not from the front. Nowadays they check kids for that in 4th grade.
abby

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@rareeby

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.

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Have any of you had the surgery with the Harrington rods? I did in 1973, age 16. My spine is almost totally fused. Having no pain, just discomfort, especially with digestion and poor posture due to the fusion. (I still have some muscle imbalance and “twisted” ribcage), not repaired with surgery.

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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.

Liked by safetyshield

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@rareeby

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.

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I am 61 and never had the rod nor do I remember ever having that approached to me

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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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