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OctaviaWood (@octaviawood)

Adults living with scoliosis, thoracic stenosis

Spine Health | Last Active: Dec 1, 2016 | Replies (41)

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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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Replies to "Hi @aeb1957 and welcome to Connect. Your message is very brief. Can you tell us a..."

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

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.

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).

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?

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