Scoliosis - Introduce yourself and meet others

Let's talk about living with scoliosis.
As a community moderator of the Bones, Joints & Muscles and Spine Health groups, I've noticed several members talking about scoliosis, but those discussions were scattered throughout the community. I thought I would start this discussion to bring us all together in one place.

Get comfortable in your favorite spot, grab a beverage of your choice, and let's chat. Why not start by introducing yourself?

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

Hello @leslie324, @vickiekay, @gailb, @cathyh, @edieguinn, @jeriliz, @christinek, @sutherlin, @kdubois, @123zale, @vbrunette, @atrex, @bernese53, @trish602, @barbara94, @johnjames, @lynettegable@annieecruz, @detzler@sauwoon8@mieke@ruben130476@safetyshield, @mieke, @rareeby, @kpete65,  and @disgusted. I would like to invite you to the new discussion about all things scoliosis to make it easier for you to meet other Connect members discussing and living with scoliosis.

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@JustinMcClanahan

Hello @leslie324, @vickiekay, @gailb, @cathyh, @edieguinn, @jeriliz, @christinek, @sutherlin, @kdubois, @123zale, @vbrunette, @atrex, @bernese53, @trish602, @barbara94, @johnjames, @lynettegable@annieecruz, @detzler@sauwoon8@mieke@ruben130476@safetyshield, @mieke, @rareeby, @kpete65,  and @disgusted. I would like to invite you to the new discussion about all things scoliosis to make it easier for you to meet other Connect members discussing and living with scoliosis.

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Please advise clinic trials from the author Adam Heller, and the book ZERO PAIN NOW, conducted at the Mayo Clinic, previously, mentioned in book.<br> <br>Is this mind-body review of negative emotions actively being used at Mayo Clinic today to reduce or eliminate chronic pain ?

***NOTE from the Community Director***
Adam Heller, Zero Pain Now and its affiliated products, processes, education materials, and mind-body review techniques are not affiliated with Mayo Clinic.

ZeroPainNow’s website disclaimer states:
“Mirelle Publishing, LLC, (MPLLC) is a publisher of information for educational purposes only. MPLLC is not a licensed medical or health care provider and does not employ licensed medical physicians, nurses, dietitians, nutritionists or other medical or health care service providers. MPLLC is not affiliated with any medical or other health care institution. MPLLC publishes materials under the title “Adam Heller’s Zero Pain Now®” which includes videos, a book, and a workbook. These components make up a “Process” and all components are offered subject to this disclaimer. Neither the Process nor the Process materials or content have been approved by the Food and Drug Administration, the Federal Trade Commission or any other government agency. MPLLC does not give medical advice or opinions on medical conditions, treatments or cures; and you should not rely upon anything in the Process or Process materials as a preventive, cure or treatment for any purposes.”

While Connect moderators don’t discourage members from seeking alternative resources of information and techniques to deal with their pain, it is our responsibility to inform members on claims referring to Mayo Clinic. In this case, ZeroPainNow does not have an affiliation to Mayo Clinic and the claims and results made on the website can neither be confirmed nor discredited.

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@JustinMcClanahan

Hello @leslie324, @vickiekay, @gailb, @cathyh, @edieguinn, @jeriliz, @christinek, @sutherlin, @kdubois, @123zale, @vbrunette, @atrex, @bernese53, @trish602, @barbara94, @johnjames, @lynettegable@annieecruz, @detzler@sauwoon8@mieke@ruben130476@safetyshield, @mieke, @rareeby, @kpete65,  and @disgusted. I would like to invite you to the new discussion about all things scoliosis to make it easier for you to meet other Connect members discussing and living with scoliosis.

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I am very happy to join in on a discussion about scoliosis. I have had severe rheumatoid arthritis for 30 years and am now 57 years old. In 2004, I had a laminectomy and a discectomy on L4-L5....and since then, severe scoliosis has developed. My spine has two curves and a LOT of pain that has led to using a small electric scooter (called a Luggie) since I cannot walk distances.

I have tried many things for relief. In addition to my RA meds including Enbrel, Prednisone and anti-inflammatories, I am on Cymbalta, Hydrocodone and Fentenyl patches since the pain is so horrid. Acupuncture, massage therapy and yoga have all offered some relief.

But the BEST relief has been Rolfing! It has been an amazing process that is best described as deep tissue work on pressure points. I HIGHLY recommend this if you are suffering. Look it up on the internet and find a certified Rolfer. There are two groups who do this type of work: Rolfers and Structural Body Integrators. The people who do Rolfing, in my experience, are MUCH more effective in helping me. After seven sessions with a Rolfer, I am now able to walk a short distance -- and people are noticing that I am not bent to the side like I had been! Hooray!

I just ordered an infra-red heating pad from Amazon and it will arrive tomorrow - the infra-red heat is supposed to be more penetrating than a regular heating pad....so I keep trying "stuff".....anything to feel better!

I will look very forward to hearing what has worked for the rest of you! Thanks for sharing!
Vickie

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@JustinMcClanahan

Hello @leslie324, @vickiekay, @gailb, @cathyh, @edieguinn, @jeriliz, @christinek, @sutherlin, @kdubois, @123zale, @vbrunette, @atrex, @bernese53, @trish602, @barbara94, @johnjames, @lynettegable@annieecruz, @detzler@sauwoon8@mieke@ruben130476@safetyshield, @mieke, @rareeby, @kpete65,  and @disgusted. I would like to invite you to the new discussion about all things scoliosis to make it easier for you to meet other Connect members discussing and living with scoliosis.

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The website for the American Chronic Pain Association at http://www.theACPA.org is not accessible! It says that it is forbidden...???

I am going to look up the book that you mention though! I am ready for ZERO pain!!! Whew! Thanks for the information!

Vickie

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@JustinMcClanahan

Hello @leslie324, @vickiekay, @gailb, @cathyh, @edieguinn, @jeriliz, @christinek, @sutherlin, @kdubois, @123zale, @vbrunette, @atrex, @bernese53, @trish602, @barbara94, @johnjames, @lynettegable@annieecruz, @detzler@sauwoon8@mieke@ruben130476@safetyshield, @mieke, @rareeby, @kpete65,  and @disgusted. I would like to invite you to the new discussion about all things scoliosis to make it easier for you to meet other Connect members discussing and living with scoliosis.

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I have the book and work book, Stop Pain Now, and am actively reading and doing the exercises.<br> <br>I am interested in Mayo Clinical Trials.<br> <br> <br>I do not know why http://www.theACPA.org is not up.

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I'm Jeri. I am 75 and was diagnosed with scoliosis about 15 years ago. I have many other spine problems and live with a lot of pain.

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@jeriliz

I'm Jeri. I am 75 and was diagnosed with scoliosis about 15 years ago. I have many other spine problems and live with a lot of pain.

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Good morning. I am MollyB. I was just diagnosed with scoliosis. I did not know I had it. I have noticed in the past years it hurts to do things I love to do. This year I had the bone density scan which shows scoliosis and beginning of osteoporosis. I can not take calcium as my calcium in my blood is always high due to hyperparathyroidism. I want to learn as much as I can through this media. Thank you.

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@JustinMcClanahan

Hello @leslie324, @vickiekay, @gailb, @cathyh, @edieguinn, @jeriliz, @christinek, @sutherlin, @kdubois, @123zale, @vbrunette, @atrex, @bernese53, @trish602, @barbara94, @johnjames, @lynettegable@annieecruz, @detzler@sauwoon8@mieke@ruben130476@safetyshield, @mieke, @rareeby, @kpete65,  and @disgusted. I would like to invite you to the new discussion about all things scoliosis to make it easier for you to meet other Connect members discussing and living with scoliosis.

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@vickiekay, I got on the web site by leaving "www" out of its address: https://theacpa.org. Or Google the name of the organization and get the address there.

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@JustinMcClanahan

Hello @leslie324, @vickiekay, @gailb, @cathyh, @edieguinn, @jeriliz, @christinek, @sutherlin, @kdubois, @123zale, @vbrunette, @atrex, @bernese53, @trish602, @barbara94, @johnjames, @lynettegable@annieecruz, @detzler@sauwoon8@mieke@ruben130476@safetyshield, @mieke, @rareeby, @kpete65,  and @disgusted. I would like to invite you to the new discussion about all things scoliosis to make it easier for you to meet other Connect members discussing and living with scoliosis.

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Would love to talk about this topic! I was diagnosed with scoliosis at about age 12, but I never wore a brace. Though it never got super-bad, I don't like my posture, so I am scheduled to begin yoga in May as I've read that it can help. I also bought a device that is worn that keeps reminding you to sit upright when you slouch, but I haven't tried it yet.

Unfortunately, my daughter inherited it from me, and she was diagnosed by age 10. After wearing a brace for several years, it still progressed enough to be very visible, and it would have started damaging her internal organs, so in December 2014, at age 12, she had spinal fusion. she has two titanium rods aligning her spine with screws holding them in place. It's a rough surgery to go through, but her surgeon made it clear that the longer we waited to do the surgery, the harder it would be on her to recover.

The fusion has helped her significantly; we no longer have to worry about damage to her internal organs, there's no curvature visible at all, and clothing fits her much better. If you didn't know she had the surgery done, you wouldn't even know it because her scar is barely visible at all. She still grew some at the top and base of her spine, so she'll be a nice height in adulthood.

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