Bone health and scoliosis
I’m interested in how to manage the pain from scoliosis and how it affects other joints in the body. I cannot control the pain. I have been taking Tylenol with a boost from Aleve once in a while. It’s becoming more and more intolerable with no relief I’m told. The pain is in my lower back, hip, and knee(left side knee and hip). The pain is starting to radiate into the left groin area as well. I can only walk very short distances with rest in between I walk everyday trying not to give into it. I’m afraid I’ll end up in a wheelchair
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My primary didn’t really have much to say about this disease. I’ve learned more on this site about possible treatments. The physical therapy that I’ve had on and off over the past 4 years hasn’t helped at all. Since I’m exploring PT specifically designed for scoliosis I think traditional back therapy could be detrimental. I don’t know it for sure but traditional therapy seems to want to move me in ways that are the opposite of what I’m going to try. Looks like trying to align the spine in a counter position makes more sense but I haven’t tried it yet. I’ll let you know how it goes. The spine can’t be shifted at this point but movement in the opposite way of the curvature seems to make sense. Just being aware of my posture helps. When I’m tired I can realize how much I’m favoring the pain and then I coach myself to stand and walk straighter. Strange as it sounds, when I straighten myself it does relieve the pain somewhat. It’s just hard to do when I’m tired which this whole thing does to me.
My sister was totally bent over even though she had surgery 10 years previously. She had rods placed in her back which over time bent with her body. I’ve never seen anyone so afflicted with scoliosis. She was on opioids for years when they could prescribe them so I don’t know what effect they had. I think the girl was so tired of the whole thing she lost her enthusiasm for living. That’s why I refuse to give into this. I’ve gotten some encouraging info from this site and will continue to look into every option.
I can always become aware of someone worse off than me. Family is so important for staying positive, it’s work sometimes but worth it
I sit in meditation and read from inspirational material (mostly the Bible but there other great things to read, every morning after a cup of coffee which helps make for a good day. I do it before the day gets away from me. It absolutely works.
I am the same. I walk talk and try to stand up straight. It does feel better. My stomach feels better when I do that. They say this can effect your digestion pushing everything in the wrong place.
As an occupational therapist, I’d highly recommend either PT or OT depending on your goals. And, definitely try to find a therapist who has experience with scoliosis as therapists often focus on a certain population. Whenever I hear someone say that therapy was not helpful, I think, that either they just had a bad therapist (and there is a range of providers, just like doctors, some are good, some not very good) or that the therapist was not knowledgeable in your diagnosis and just provided general therapy activities.
PT would help with building or maintaining the best muscle strength that you can, maintain your range of motion, maintain mobility, and best positioning to minimize further curvature and/or improve organ function (fully inflating lungs, helping digestion, circulation).
An OT helps you find ways to accomplish your “occupation” - which is anything from house chores, self care, access to work tools, computer access, sports, hobbies, cooking, going out into the community successfully. They can also work on energy efficient adaptations. For example, with scoliosis you may become tired doing your laundry or chores. There are some things that would help reduce bending and lifting (like roll around carts) that can be adapted to your personal needs. Think about what activities are most important to you, and that should become part of the OTs goals. OTs also address positioning and mobility, usually related to your activity goals.
To get your insurance company to pay for therapy, they are always considering cost/benefit. If it will reduce their expenditures later on, they’re all for it. So when you explain why you need therapy, use terms the insurance company likes. I don’t mean lie, just help them understand it’s in their benefit to help you. “Therapy will help me keep independently mobile, therapy will help me care for myself longer by adapting self care routines or house chores. Therapy will help me stay employed longer because I can be mobile, maintain endurance, succeed at the work activities required by my employer. Therapy will help me stay independent and healthy lowering medical costs if I can safely exercise and/or engage in my hobby.”
Even a few appointments with a therapist can point you in the right direction and you follow through on your own. I think OTs and PTs are underutilized, but then I’m an OT and know what the outcomes could be.
(I was a school based OT and assistive technology specialist working with children in school. Scoliosis is not my area of training, so cannot suggest specific therapeutic solutions.)
I’m told that as the spine develop, it’s very possible that it pinches the nerves. In my case I have constant lower back pain, pain that runs along my left side and into my foot. The orthopedic people that I’ve consulted with tells me it’s all connected. I’m now, for the first time, starting a pt program which helps with the alignment and hopefully helps to stop it at least slows it down
On this chat site someone had a surgery unlike any of heard about. I haven’t wanted to go the surgery route but would consider it now if the pt isn’t effective. There’s a memo on this site which speaks to both options if you want to scroll through. I found a scoliosis pt specialist near me so I’m hopeful.
Thank you for that information. I’m looking forward to meeting a scoliosis specialist. The narrative is very much like you are describing. I’m hopeful for the first time in three years. Thanks you
Thank you for your reply. United Healthcare Medicare Advantage Plan in Pima County AZ won't pay.
That’s bad news. I also have UHC Medicare Advantage coverage but it’s a different group in TX. I’ll have to go check my policy 🙁
Outpatient OT and PT are covered on just plain Medicare, as long as it’s considered medically necessary. It’s a bummer how the advantage plans change around what they’ll pay.
Every state is different. AZ, Pima County, is horrid with their care and doctors. I have to live with it. I noticed my Aunt in NY has UHC and she gets much better care too.
Thank You for caring!