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.

@fighter

Reading your description "... until it unclenches." makes me wonder if the spinal issues I have in my back make my muscles around my hips clench in spasm. They literally make me feel like they'll throw me to the floor, and I can only hold on and until it lets loose. My cervical spinal issues cause muscle spasm, too, but not the same way. I can end up with cervicogenic headache.

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Yes. Last inpatient physical therapist thought I had boa constrictors moving under my skin. It actually scared her. Then her and her buddy came back and videoed it cuz the surgeon didn’t believe it.

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@123zale

I’m using 300mg capsules, 9,000mg per 30 quantity in container.

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I used a liquid extract.

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@sueblue

Hi all, I have severe scoliosis crushing my lungs going across my chest towards my heart and also my diaphragm is up in my lung area. I was told there is nothing that can be done to stop the progression. I am elderly and have osteoporosis and the screws would not hold. The hollow area between my 2 collarbones is now over to the right of my neck and my esophagus and trachea are bent at the collarbone area. Also my abdominal area is affected to the point that my gallbladder is down with my appendix. I never had scoliosis until I had a bad fall about 10 years ago and started to feel short of breath. It was first diagnosed as exercise induced asthma but it turned out to be my spine. I was basically told that eventually I will suffocate to death which did not make me feel too good but I have learned to live with it. My breathing is getting worse, especially since this past February I fell and broke my right hip and shoulder and must have jarred my spine as my breathing is worse since then. Those are the only 2 falls I have had and that first one was on concrete where I tripped on a cement car stop on a snowy day and went down face first with my bag in front of me digging up into my diaphragm. I also lost 4 front teeth from that fall. I had taken hubby for a 2nd procedure to try to remove a 180 degree precancerous polyp from his duodenum and he was still a bit loopy when they discharged him so I was paying more attention to him than where I was walking. I actually fell in the hospital parking lot. It really was a doozy of a fall.

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Good grief, that sounds horrible beyond imagination. I am so sorry that you are dealing with this! I wish I could help you. 😢

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@jackl

No! I’m allergic to all that stuff. Opiates, muscle relaxers, all of it. I take Celebrex, tylenol and gabapentin. As long as I keep moving I’m ok. My problem is I mentally bury the pain. Works for me 99% of the time. But that last 1% is killer. I find it takes not much to trip me over into a state of anger. So I try to stay away from people, driving, stores...etc.

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We all react differently. I tried gabapentin once, years ago, for a jaw problem and quit after two or three days. Felt like I was having an out of body experience, hard to explain. Couldn’t work like that.

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@jackl

Not legal where I live.

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Do you want to try it? Is there a state near you where it is?

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Actually no. I’ve seen what legalizeDpot has done to Colorado, California, Oregon, and Washington. I’m sticking with completely with anti inflammatory. I use exercise and walking to release those endorphins and increase circulation and such. I’m happy. I live with my best friend in life, my wife of 40 years. I just need a way to cope with it when the bottle I shove pain into, overflows.

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I am curious, have you lived in all of those states? What has it done. I tried some last year while living in Seattle and slept great. Wish I could always sleep that well. Sigh.

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@wisco50

I am curious, have you lived in all of those states? What has it done. I tried some last year while living in Seattle and slept great. Wish I could always sleep that well. Sigh.

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@wisco50 I hope this was sent to me. Iowa is our home state and we are here. We lived in Seattle area for 11 years, then San Diego for 5 years and then back to Iowa. We were on the west coast for 20 years. I miss Bellevue, where we lived last. I loved living in Seattle, but it was time to come home.

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@wisco50

We all react differently. I tried gabapentin once, years ago, for a jaw problem and quit after two or three days. Felt like I was having an out of body experience, hard to explain. Couldn’t work like that.

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@wisco50 @jackl Yes, I have tried gabapentin several times and I felt I was have an out of body experience. Couldn't think straight.

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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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@JustinMcClanahan I had degeneration of my spine, which caused a scoliosis. I had surgery from T-10 to my pelvis. Also had stenosis at L4 & 5. It was severe. The surgery was 9 hours long. After almost 3 month I just have some pain. Most of my pain is when I walk or lay down without the brace. I need to ask my surgeon how much he got the scoliosis straighter. I will ask him the next appointment in October. I walk a lot and do 1/4 to 1/2 mile every day. I do Tymlos to increase my bone density. My bones are very soft and I have to do Tymlos for 2 years and the some other med after that which I hope my bones get stronger.

Anyway the surgery help my scoliosis pain.

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