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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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@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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Thank you for the information gailfaith. I have been wanting someone to talk with about this. I had an endocrinologist that wanted me to go on calcium medication Sensipar but I could not afford $300.00 a month for the meds. So she told me I was non-compliant. I also have type II diabetes, cirrhosis of the liver and heart blockages. My question is are they all inter-related somehow. I quit going to the endocrinologist as she was very rude. It is not that I don’t want to take medication but if you can’t pay for it, I think they should understand. I am 69 in just a few days. No one else has mentioned having surgery. My family doctor says he will wait until I start having kidney stones (which I have not had). PTH is up and down and is normal right now. I so appreciate talking with you about this as the doctor just ignores it. I live in West Virginia and don’t know if we have a qualified surgery here. Please keep in touch and let me know how you are doing. Do you feel any different after the surgery.
Thanks again, MollyB

Have been looking for information on this topic as I have scoliosis with chronic pain! Thank you. I live in Boston and would like to know if there is medical help for me here.

@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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*Moderator’s Note*
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.

I would rather not be a part of the discussion because while it is one of my diagnoses, I have no symptoms. I don’t feel I would have anything valuable to this particular discussion. Thanks for the consideration.

@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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Hello @123zale,

I just posted a moderator’s note about Zero Pain Now. Thank you for asking us to look into this resource.

We were unable to find an affiliation between Zero Pain Now and Mayo Clinic. This is not intended to discourage your inquiry or personal success with seeking alternative therapies. We appreciate your bringing it to our attention and asking the question about whether or not there was any research being done in conjunction with Mayo Clinic. I look forward to your continued participation on Connect, and specifically in the Scoliosis discussion.

@cathyh

I would rather not be a part of the discussion because while it is one of my diagnoses, I have no symptoms. I don’t feel I would have anything valuable to this particular discussion. Thanks for the consideration.

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Thank you for your response @cathyh. No problem if you do not want to be part of this discussion or receive notifications for this discussion. To unsubscribe from this discussion:

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This will stop any email alerts from this discussion thread. Please, do not hesitate to ask any questions if you have any troubles.

Reid and diagnosed with sclerosing mesenteritis about a month ago just trying find out anything about it and support. Thxs so much

@cathyh

I would rather not be a part of the discussion because while it is one of my diagnoses, I have no symptoms. I don’t feel I would have anything valuable to this particular discussion. Thanks for the consideration.

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Hi, Cathy! You may need to search for my earlier post, but I have had amazing results from Rolfing — look it up on the internet and find a certified Rolfer in your area — it is worth every penny for the sessions that are massage/pressure point/stretching procedures. I was almost unable to walk and used an electric scooter — now I am able to walk a short distance and it has actually made a good difference on my MRI!!! WOW!! PLEASE try it!!! Vickie

I am very happy to see this topic. I have found my way to scoliosis in a different way, perhaps. I did have a “sway” lower back since childhood. I had an acute, multiple trauma accident in 2009. I was 48 at the time and due to determination and a lot of hard work, I did learn to walk again and recovered for the most part. I have hardware throughout my body and a total shoulder replacement. I was fortunate to be under the care of a most skilled trauma surgeon. As a result of the multiple fractures in my pelvis and the separation of my sacrum from my pelvis the scoliosis in my lower back is pronounced. A PT explained it to me. It is not a twisting and curving but rather a straight curve. I hope that makes sense. My sleep is always interrupted after a few hours with extreme discomfort. I am on pain management medications along with past cortisone injections, massage and PT. Those are for the various other issues besides this topic. I am not sure what else to do to make things easier for myself. I did buy a new bed. I needed one as the last one was way past it’s useful life. I am not sure it is right. It’s firm and I do think mostly it is just living with my body the way it is now. In other words, I am not sure any mattress would be “perfect.” I did a lot of research and speaking to people to help me make a decision. I’ve only been sleeping on it for a week. I am trying to keep myself active and strengthen my muscles in my body. I always wonder what others do to help.

@kljones761

I am very happy to see this topic. I have found my way to scoliosis in a different way, perhaps. I did have a “sway” lower back since childhood. I had an acute, multiple trauma accident in 2009. I was 48 at the time and due to determination and a lot of hard work, I did learn to walk again and recovered for the most part. I have hardware throughout my body and a total shoulder replacement. I was fortunate to be under the care of a most skilled trauma surgeon. As a result of the multiple fractures in my pelvis and the separation of my sacrum from my pelvis the scoliosis in my lower back is pronounced. A PT explained it to me. It is not a twisting and curving but rather a straight curve. I hope that makes sense. My sleep is always interrupted after a few hours with extreme discomfort. I am on pain management medications along with past cortisone injections, massage and PT. Those are for the various other issues besides this topic. I am not sure what else to do to make things easier for myself. I did buy a new bed. I needed one as the last one was way past it’s useful life. I am not sure it is right. It’s firm and I do think mostly it is just living with my body the way it is now. In other words, I am not sure any mattress would be “perfect.” I did a lot of research and speaking to people to help me make a decision. I’ve only been sleeping on it for a week. I am trying to keep myself active and strengthen my muscles in my body. I always wonder what others do to help.

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Not sure if you have tried it but I have a very small cushion to support my lower back, I got the idea after using those lumbar supports for the car and my desk chair, It was actually a roll cushion that I just took out of its over case, and so about 8 x 15 inches. When I have surgery so on a very hard bed I get them to put a folded towel in that area. so its supporting the Sacro Ileac area, then my back muscles are not having to work all night long. Hope you adjust to your new mattress

@kljones761

I am very happy to see this topic. I have found my way to scoliosis in a different way, perhaps. I did have a “sway” lower back since childhood. I had an acute, multiple trauma accident in 2009. I was 48 at the time and due to determination and a lot of hard work, I did learn to walk again and recovered for the most part. I have hardware throughout my body and a total shoulder replacement. I was fortunate to be under the care of a most skilled trauma surgeon. As a result of the multiple fractures in my pelvis and the separation of my sacrum from my pelvis the scoliosis in my lower back is pronounced. A PT explained it to me. It is not a twisting and curving but rather a straight curve. I hope that makes sense. My sleep is always interrupted after a few hours with extreme discomfort. I am on pain management medications along with past cortisone injections, massage and PT. Those are for the various other issues besides this topic. I am not sure what else to do to make things easier for myself. I did buy a new bed. I needed one as the last one was way past it’s useful life. I am not sure it is right. It’s firm and I do think mostly it is just living with my body the way it is now. In other words, I am not sure any mattress would be “perfect.” I did a lot of research and speaking to people to help me make a decision. I’ve only been sleeping on it for a week. I am trying to keep myself active and strengthen my muscles in my body. I always wonder what others do to help.

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Thanks so much for the suggestion. I will certainly try the small cushion. I appreciate it!

@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, Happy BIrthday on 5/5 I think you said. And to answer your question, no I do not feel any different after the surgery, probably because I had no symptoms before surgery! @gailfaith

@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 just had a L4-L5 fusion and two spacers last week as I have degenerative disc disease. In your recovery from your surgery did you have horrible hip pain when walking? I know the L4 nerve is responsible for the pain I was having in that area before the surgery but it is so intense now. Does it go away? How long did it take before you saw relief

I am GailB, and i only learned a few years ago that i have scoliosis that seems to affect my right side and the thorasic section of my back. I also have a compression fracture in my neck, C7, degenerative disc disease, ankolosing spondylosis, herniated L4, and I had laminectomy surgery on my L5-S1 in December 2016 to correct the bone impinging on my spinal cord. My lumbar issues are much better now.

I didn’t know that scoliosis was really a problem until a short time ago. My masseuse showed me that my right leg is shorter than the left and that my entire body on the right sticks up farther on the right when I’m lying on my back. Im sure this is the reason I had to wear leg braces when I was a kid. I hated them as they were a sign of polio back then. Im 68 years old. Of course no one told what they were for.

I’m happy for any information you are willing to share about ways to ease the chronic pain without prescription drugs as I have just gotten myself off 2 meds.

Hi, Gailb! My story is almost identical to yours except for the braces/polio as a child. Instead, I had to wear special shoes because my gait was “off-kilter”! As an adult, at the age of 30, I was diagnosed with rheumatoid arthritis. I have now, at the age of 57, been diagnosed with adult-onset scoliosis. I had compression fracture at C-6; I have had a herniated L4 with a laminectomy and discectomy at L4-L5 in 2005. I have stenosis as well and a LOT of spinal and hip pain, I have two artificial knees and my gait continues to be “off-kilter”…..I often need to use an electric scooter since I am unable to walk distances any more. I had been going for weekly massages and they did help. However, I have been getting Rolfing treatments and they have given me the most success with both pain management and mobility issues. I HIGHLY suggest that you look this technique up and find a certified Rolfer in your area. There are ten sessions to a treatment plan and I pay $125 per session….it is a commitment, but I also drive four hours round trip each week to see my Rolfer who is fantastic! For awhile, I had a similar treatment called Structural Body Integration which is a branch of Rolfing, but the Rolfing has given me much more relief. I cannot express how much this has helped me! People are even noticing that I am standing straighter and walking farther! Best wishes!!!!!
VickieKay

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