Adults living with scoliosis, thoracic stenosis

Posted by OctaviaWood @octaviawood, Sep 13, 2012

Searching for Adults living with scoliosis, thoracic stenosis

Interested in more discussions like this? Go to the Spine Health Support Group.

@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.

Jump to this post

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

REPLY
@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.

Jump to this post

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.

REPLY

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.

REPLY
@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.

Jump to this post

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

REPLY

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

REPLY
@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

Jump to this post

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

REPLY
@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

Jump to this post

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

REPLY
@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

Jump to this post

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.

REPLY
@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

Jump to this post

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

REPLY

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

REPLY
Please sign in or register to post a reply.