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.
Hi, I was diagnosed in 2008 along with my son who was 22. We realized my mom, who passed away at age 51 had also had it. Although my issues were lifelong, sprains, ribs out of place, easy bruising, bad proprioception (walking into things), stretchy skin, etc, I was called double jointed and didn't think too much of it. My son had pectus excavatum surgery at age 6 and was very hypermobile and also has IBS and headache issues. He was referred to genetics where Marfan's was considered (he's 6'7" tall). I was being seen in Rheumatology at the same time and we figured out we had EDS by looking at all the symptoms.
My biggest issues now are instability at C1/C2 causing chronic migraines and neck pain. An auto accident didn't help. Also, I have major issues with my pelvis and SI joint. Working with a headache specialist has been very helpful, so I was happy a very knowledgeable one is now at Mayo Jacksonville.
A group of International EDS experts met in May and are reevaluating the diagnostic criteria for all types of Ehlers Danlos Syndrome with the results to be published Spring 2017.
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.
You sound very up-to-date on the research related to Ehlers Danlos Syndrome. Having update diagnostic criteria will be welcome for the treatment of this relatively rare disorder.
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.
@mieke, I moved your question to this thread, hoping that someone here may have experience on Schroth therapy to share with you. I'm also tagging @jenkob and @suee who may have thoughts to add.
Thanks, Colleen. My orthopedic doctor says the therapy has no influence on the Cobb's angles (maybe it has an effect on pain levels and muscles problems/well beiing), but in the book about Schroth therapy I read something else.
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.
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.
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.
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?
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
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.
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.
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?
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.
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
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Hi, I was diagnosed in 2008 along with my son who was 22. We realized my mom, who passed away at age 51 had also had it. Although my issues were lifelong, sprains, ribs out of place, easy bruising, bad proprioception (walking into things), stretchy skin, etc, I was called double jointed and didn't think too much of it. My son had pectus excavatum surgery at age 6 and was very hypermobile and also has IBS and headache issues. He was referred to genetics where Marfan's was considered (he's 6'7" tall). I was being seen in Rheumatology at the same time and we figured out we had EDS by looking at all the symptoms.
My biggest issues now are instability at C1/C2 causing chronic migraines and neck pain. An auto accident didn't help. Also, I have major issues with my pelvis and SI joint. Working with a headache specialist has been very helpful, so I was happy a very knowledgeable one is now at Mayo Jacksonville.
A group of International EDS experts met in May and are reevaluating the diagnostic criteria for all types of Ehlers Danlos Syndrome with the results to be published Spring 2017.
Nice to get to know about about you Lisa, and your family history with scoliosis. Who is the specialist at Mayo Jacksonville that you're working with?
You might also be interested in the discussion going on in the Chronic Pain group called "Scoliosis and Chronic back pain" https://connect.mayoclinic.org/discussion/chronic-back-pain-2c72ae/ Here you'll meet other members managing scoliosis, like @detzler @sauwoon8 @mieke @ruben130476 @safetyshield and @disgusted
You sound very up-to-date on the research related to Ehlers Danlos Syndrome. Having update diagnostic criteria will be welcome for the treatment of this relatively rare disorder.
Thanks! I see Todd Rozen in Neurology
Thanks, Colleen. My orthopedic doctor says the therapy has no influence on the Cobb's angles (maybe it has an effect on pain levels and muscles problems/well beiing), but in the book about Schroth therapy I read something else.
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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3 Reactionsalannaj 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.
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
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1 ReactionIs 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.
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?
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
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