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Scoliosis - Introduce yourself and meet others

Posted by @JustinMcClanahan, Apr 25, 2017

Let’s talk about living with scoliosis.
As a community moderator of the Bones, Joints & Muscles group, 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?

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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.

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

@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

@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

@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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You can get the book from Amazon too or look up: https://zeropainnow.com/

Liked by Vickie, magspierce

@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.
 
I am interested in Mayo Clinical Trials.
 
 
I do not know why http://www.theACPA.org is not up.

Liked by magspierce

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.

@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.

@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.

@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.

Good morning all, I was kicked in the lower back by my sister when I was aged around 10, I still remember the months of pain at the time. Then the on going problems. AS a teenager I put it down to having ‘nurses back’ in those days no lifting gear available.
The first mention was when I was around 40 and an Xray mentioned mild scoliosis, and then when 55 an Xray reported twisting scoliosis.
Ive never had special treatment for it, apart from physio to keep me going from acute episodes.
Now Im about to hit 70, and finding that its getting more restrictive,
hoping to get to know you all and learn the tricks to keeping on keeping on!
MuffinCat

Hi, my Connect name is @gailfaith and I apparently have had slight scoliosis for years, (no discomfort). I have a chronic “bad back” since 1963 when I drove 14000 miles in 4 months working with blind kids and smooth collies throughout the eastern US – and slept 4 mites in a bed – otherwise on the front seat of my car or someone’s couch, In the beginnings (’63) I slept on the floor (anything hard) and that seemed to help. Now I am 81 and with myotonic dystrophy “precipitated” by a doctors mistake that was Dx at Mayo in 2013. SInce my Mayo adventure, I have been in weekly PT, hoping to stay out of a wheelchair. Currently I have a walking project and since Aug 23, 2016, I have now walked 75 (actually measured) miles with 2 canes with my therapist’s blessing.. During the years I have tried hard and softer mattresses, but within the last 4 or 5 years, I purchased a Sleep Number Bed (so I can go from hard to soft at no additional cost !!!). However, the sales people at the store told me if I sleep on my back or side, to keep it on the soft side. It seems a setting at 35 is/was OK. But recently, my spine has decided to move to the right and my scoliosis can be seen by my right hip protruding. I can’t help but wonder if my Sleep Number Bed set between 35 and 45 or thereabouts had been responsible for the progressed scoliosis, Has anyone else had any experience with SN beds and the degeneration of scoliosis? However, one benefit of my SN bed is that I can now stretch my back with the setting at 100 and I no longer have to get on the floor to do so from which it is difficult for me to get back up!

@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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Hi mollyb. Not leaving the subject of scoliosis, but I did noticed you have a high Ca level due to your parathyroid. Have you considered surgery for your parathyroid? I went to Mayo in MN in June of this year and had successful surgery done there. Now we are just monitoring my Ca levels, trusting it stays in the desired range. Has anyone suggested Ca for scoliosis? @gailfaith

@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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No one has suggested surgery as I am 69 on 5/5. I have been told not to take Ca due to my levels always being high. I quit going to the endocrinologist due to the long drive. I am curious to know if the high Ca levels and hyperparathyroidism has anything to do with the cirrhosis of the liver. If you have any suggestions, please let me know @MollyB.

@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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Hi mollyb, I was 80 this past April when I had the surgery to reduce the Ca levels that have been high for years. Now that I am in a retirement community the Dr. here brought up he subject, but also recommended that I my age not to do anything about it! After looking at recommendations on the internet, i decided to ignore him. Recommendations that I found were to find a surgeon that does at least 3 parathyroidectomies a week, does them in 15 minutes, all successfully. I went straight to Mayo where after many tests the surgeon assigned to me did the surgery. I asked her how many she had done and she said over 45000 and that is all she does and operates 3 days a week. She did the surgery on a Tuesday afternoon and I was on the plane heading home the next morning. I had asked a neighbor who was a general surgeon, what was the surgical risk on that surgery and he said you can loose your voice. I had two of the 4 parathyroids that were enlarged, but she removed one, did blood tests during surgery and since that brought the CA levels right away (!) to within normal range, left well enuf alone with the other one. Last blood work recently, the Ca was within normal levels. However I still have to limit my Ca supplements to 600 mg/day but I do eat a lot of low fat cheese for the protein for my myotonic dystrophy also Dx at Mayo in 2013 and osteoporosis (despite the high levels of Ca previously!!!)t. Not that Mayo is easy for me to get to, it is 3 separate flights, but I think I would in go back in a heartbeat if needs be. My local endocrinologist orders the blood tests and he, my GP, and the Mayo surgeon gets the reports. Have you had any kidney stones as a result of your high levels? I did not before the surgery, but one right after the surgery because the body was trying to get rid of the previously high Ca that was also removed under anesthesia because of its size. I thought I was having a VERY, VERY mild attack of diverticulosis that I haven’t had for years. However, after a week, I went to the ER where they said it was a kidney stone. No problems since.

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