Searching for Adults living with scoliosis, thoracic stenosis

Posted by OctaviaWood @octaviawood, Sep 13, 2012

Searching for Adults living with scoliosis, thoracic stenosis

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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@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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I was diagnosed 14 months ago at the age of 62. The exam came about because my pain level was more than I could bare every day. One x-ray of the chest found the scoliosis and the doctor simply skimmed over it and said here is an n-said pain reliever and I will see you in 3 months and walked out of the room. I went to another doctor, after a neck and lumbar x-ray I was sent to physical therapy, too late, can’t touch me the neck pain is to severe. I went back to my family doctor who has known me for 20 years and my track record of no complaints and no medications who pretty much said I will give you the pain meds you require but you will have to be very careful. That is where I am today, trying to learn what I can about this ugly monster that has affected everyday of my life and I had no idea that not everybody lives with the pain I have had, I thought I was supposed to deal with the headaches and leg and back pain that barely allows me to walk from one room to another after getting out of bed in the morning. I help myself by limiting certain activities that I now know I should not do and would not have done in my lifetime if I had known what I know now, but that is to late so I want you to know that the doctor has no clue what your pain is, she has more concern with the fact that you may ask for a pain killer that will work like vicodin. The n-said is a joke. I refuse to put that in my body. If you have high blood pressure which I never had until I was 61 (caused by the enlarged heart) you should not take these but my first doctor handed me two prescriptions before leaving the room. Lisinopril for high blood pressure and an n-said for the pain. Go figure. So do your research on the pain and I would say from experience that if you are continuing to live life the same as before your diagnosis yes it is getting worse because you need to know what your physical limitations are now and they are not what they were before. Sit down more you are entitled. Good luck!!

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Adult scoliosis

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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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Does someone with adult scoliosis in this group have experience with Schroth therapy?

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@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.

Liked by mieke

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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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Thanks for the link, Colleen! Is there a way to conect with adult patients that had a spinal fusion?

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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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I try to manage my severe scoliosis with manual therapy twice a week. Sometimes (often) manipulations do more harm then good. The root of the pain is often in my pelvis due tot hypermobility and the therapist often tries to loosen up a rib or vertebra, that is a result of the imbalance in the pelvis. Treating triggerpoints in muscles is working the best, the spine then finds it’s own way to loosen up and finds it balance again. I’m taking supplements for the bones too, 5000 mg of vit. D3, manganese, magnesium and Biosil. Also I take LDN. I do a light form of yoga and Chi Neng qi gong for power, stretching and relaxation.

Liked by Ali Skahan

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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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You may want to look into and consider being evaluated for connective tissue disorder (Like Ehlers Danlos or Marfan’s,etc) due to clues such as hypermobility, scoliosis, vit D deficiency, headaches. My scoliosis isn’t too bad, but my ribs don’t stay in place and muscle imbalance follows. PT has been helpful for me also, especially manual therapy and exercise to strengthen weakened area. My pelvis is an issue too. Also, heat and sometimes ice helps some. (I have Ehers Danlos Syndrome).

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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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Welcome to Connect @lisafl. We look forward to getting to know more about you. When were you diagnosed with Ehlers-Danlos Syndrome? What is your biggest challenge?

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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, 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.

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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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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.

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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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Thanks! I see Todd Rozen in Neurology

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@colleenyoung

@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.

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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.

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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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