I have severe back pain caused by severe scoliosis. I’m 76

Posted by brenda11 @brenda11, 5 days ago

Has anyone experienced severe chronic back pain caused by scoliosis which has worsened over time? I was 14 when I was diagnosed and the only option was a spinal fusion and a body cast for 9-12 months and living in a special hospital for that time. Or I could do special exercises which didn’t do much. I wasn’t in any pain for years but as I reached my mid 60s I was diagnosed with Osteoporosis and then it was still a few years after that that I had Kyphoplasty for a compression fracture of my L3.
Felt better for a few months, then the pain got worse and it felt muscular. The worse it got the more sedentary I became because standing up straight just to do light kitchen work or sitting without a couple of pillows on my lap is excruciating. I’ve missed so many important family moments and events. I did PT two different times but the last time I did feel like the therapist was really listening to me. I’ve had target injections by one “pain therapist “, which did nothing. And a second “ pain doctor “ sent me to a scoliosis specialist who basically said surgery or a very cumbersome and expensive brace which would be tight across my stomach, which I couldn’t tolerate due to other G I problems. Currently, I take 2 extra strength Tylenol twice a day 8 hours apart. I was taking ibuprofen 800 mg every 6 hours which caused me to have a bleeding ulcer. I do take Gabapentin 300 mg 3x day and 600 mg at bedtime but that was ordered for peripheral neuropathy in my feet and lower legs. I used to be so active and I want to be at least able to walk , stand and sit without this pain. It just drains me. Any suggestions would be greatly appreciated.
Brenda

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I too have scoliosis but it is just now at 65 starting to be bothersom.I was also taking the exact doesage of gabepentin for my poly neuropathy developed in my lower l1- l5 spine.My legs and feet are basically numb or dead below my knees with 0 stability while trying to walk.I after much thought decided to get off gab period as it only made me feel very lathargic .As of today they say grin an bear it, but I cannot except that.I have found at nite time my legs tend to like alot of heat and a good rub down with voltaren

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Hi I am 73 yrs old and in the same boat. I know, not news is good news. The pain is also removing my life as I once was very active in my gardens and orchard every day. I have such anal pain it’s near impossible to set or stand plus the back pain. I was dx. At about 12 yrs of age but a country school back then offered nothing. I did know how bad it would get but I was told I’d be in a wheelchair at 50 yrs of age! Well, I am not in a wheelchair but feeling like it could be next. My hubby passed six yrs ago and I am getting so bad that I can’t care for my home anymore. I push myself to keep going. I have issues with being light headed and my balance is off so I move very carefully. Mercy, I am so sorry you have to feel such pain because it is so devastating and debilitating for me. I wouldn’t wish this on anyone.

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Profile picture for applejack112 @applejack112

I too have scoliosis but it is just now at 65 starting to be bothersom.I was also taking the exact doesage of gabepentin for my poly neuropathy developed in my lower l1- l5 spine.My legs and feet are basically numb or dead below my knees with 0 stability while trying to walk.I after much thought decided to get off gab period as it only made me feel very lathargic .As of today they say grin an bear it, but I cannot except that.I have found at nite time my legs tend to like alot of heat and a good rub down with voltaren

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@applejack112 why do they say grin & bear it? What degrees are you? Is it possible to get another opinion?

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Brenda what degrees are you? There are better drugs (tylenol is not safe long term) that won’t be so harmful to your body.

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Profile picture for conchgirl @conchgirl

@applejack112 why do they say grin & bear it? What degrees are you? Is it possible to get another opinion?

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@conchgirl Hey girl, Ive been to several neurologists and because they use the same program- call (open evidence) ita ai generated program for them to quick find an issue without propee cause.It first started out you prediabetic when my total cholestorol is 157 and my aic 1.5, glucose is at 70 and all green code.Then they blamed it on beer ( which I do drink on weekends only) but cpuldnt make that prgnosis stick as I called their bluff thru Johns Hopkins in that yes it is a antagonis but not a cause which has lead up to you are disabled now accept it.I feel yesterday after our 40th anniversery meal and my legs went crasy needless to say I clentched my teeth and grenaded a molar.Please look up open evidence and you can plainly see why they dont want to fix people

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I had a 60 degree curve at the age of 64 and elected to have surgery with rods and screws to correct it because I was in terrible pain and my internal organs were starting to be affected. I have been on hydrocodone, a muscle relaxer, and gabapentin ever since, but I do have a better quality of life. Tylenol is not your answer to pain control. Hope you can find some answers.

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Profile picture for clemsonbabe @clemsonbabe

I had a 60 degree curve at the age of 64 and elected to have surgery with rods and screws to correct it because I was in terrible pain and my internal organs were starting to be affected. I have been on hydrocodone, a muscle relaxer, and gabapentin ever since, but I do have a better quality of life. Tylenol is not your answer to pain control. Hope you can find some answers.

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Tylenol does nothing at all for real pain. In my area, Tramadol is what we get, and it does not help real pain, but it helps my fibromyalgia, so I take it. One of my doctors told me several years ago that Tramadol is NOT an opioid! It was created to use in place of opioids. Yet it was added to the opioid list several years ago so they can control it also. Asprin does much more, but I have ulcers, so cannot take Insaids. Like someone else said; they do not want to make us well; just keep "treating" symptons.

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Thank you both for your comments. Gotta say it’s discouraging. My curve is also 60 degrees. I don’t expect it to get better. I’m afraid of surgery at my age since I have other issues going on and my husband still works, albeit from home, so he can only do just so much. And he’s tired at the end of the day. Plus we are in the process of packing up 27 years of stuff and I expect we’ll be throwing out at least half of it. Fortunately, we have a nice place to move to. I’ve been picking away at packing but my back pain really limits how long I can stand and move around. I try to be as independent as I can so it doesn’t all fall on him. It’s depressing how little I can do now and I feel so bad about it. Maybe I should take a chance on surgery. Seems like it couldn’t be worse than what I’m going through now.
I greatly appreciate everyone’s feedback and support.

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Profile picture for brenda11 @brenda11

Thank you both for your comments. Gotta say it’s discouraging. My curve is also 60 degrees. I don’t expect it to get better. I’m afraid of surgery at my age since I have other issues going on and my husband still works, albeit from home, so he can only do just so much. And he’s tired at the end of the day. Plus we are in the process of packing up 27 years of stuff and I expect we’ll be throwing out at least half of it. Fortunately, we have a nice place to move to. I’ve been picking away at packing but my back pain really limits how long I can stand and move around. I try to be as independent as I can so it doesn’t all fall on him. It’s depressing how little I can do now and I feel so bad about it. Maybe I should take a chance on surgery. Seems like it couldn’t be worse than what I’m going through now.
I greatly appreciate everyone’s feedback and support.

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@brenda11 my name is Dina I was recently diagnosed with severe Scoliosis I am 65. I don’t know what degree my curve is at this present time, the neuro surgeon just said severe scoliosis. That he would not recommend surgery at my age. Due to the fact that it would take up to a year to recover from the surgery and be in more pain than I am now. My back is so bad, I can’t hardly step over my tub in and out of my shower. I’ve tried lumbar bracing for doing general household cleaning. That tends to make my back hurt worse at night afterwards. Grocery shopping is what really hurts me the worst. I still help take care of my 91 year old Mother, getting her groceries and helping her shower. Afterwards I am completely in horrible pain for several days. It seems my scoliosis is increasing rapidly since March. I definitely can sympathize with your pain and situation, as far as not being able to do much anymore.

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Does anyone with severe Scoliosis have constant pain in the lower right side of their skull, like starting behind your right ear and going downward to the base of your neck? I have constant pain in this area, it causes issues with my driving, looking left or right or basically sleeping on your right side or back. I’ve tried ice packs, heating pad, icy hot. Heating pad seems to work better than anything on warm setting . Of course I can’t use it at night while trying to sleep. (Key word ) trying to sleep.

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