Scoliosis: In pain morning noon and night

Posted by meandyou @meandyou, Apr 1, 2020

I have scoliosis. Have had since 12yrs I finally found a pain management dr. And had my pain under control with medication. Then. my state switched me to Obama care! My clinic refused it and they told me i would not be able to use there service any more. Im in pain all the time Ive done p.t. tens injections exercise heat ice nothing else works but medication! I feel like im walking around with a ten lb. BOWLING BALL on my shoulders. Im just so tired from hurting every day!😪

I came by scoliosis late in life as the result of cancer surgery. I have an intrathecal pain pump. It's a small pump surgically placed in my tummy with a catheter running up my spine. It leaks about 4 mg of narcotics directly into my spinal fluid over 24 hours. I can also take another milligram of Narcotics in 10 doses over 24 hours by means of a remote control. Narcotics delivered in this fashion are one two three hundred times more effective than drugs that you swallow and have to run through your digestive system.

I don't know if your insurance will pay for this but it is the ultimate solution for this kind of pain that's just unrelenting. The volume of narcotics is so small there are no side effects, no constipation, no drowsiness. Search under my handle, wshh66, I have written extensively about my experience with the pain pump and my experience with pain clinics. I was treated and mistreated for 20 years plus by a series of doctors who were willing to treat me and a lot more doctors who are not willing to treat me. I was accused of being a drug addict, I was treated like a criminal and I was made to feel guilty for being in pain. I became a patient of the pain clinic at the University of Minnesota. There was a process I had to go through. I had to talk to a psychiatrist I had to talk to a psychologist, a neuropathologist and a palliative care doctor. Once I cleared those hurdles I was given very large doses of Narcotics. The side effects were tough and the relief was not complete. When I had cancer I had chronic pneumonia and a lot of infections so I had to wait for one year to pass infection free before they would give me the pain pump. I've had it now for more than 3 years and have the best quality of life I've had in the last 25 years.

I would encourage you to read up on the intrathecal pump and see if you think it might be right for you. If you can find someone who will put it in for you, it's much safer than pills and you cannot overdose, you cannot get high, and you cannot give your drugs away. I hope you find an answer love and blessings.

I should explain that originally I had pain all over my body but mostly on my right side due to pinched nerves. When I had my cancer surgery they remove so many lymph nodes that I got a thing called dropped foot. All of a sudden my left leg was an inch longer than my right leg and it was causing me to fall down but after that ended basically the extra leg hammered the spine to bend out to the right which fixed the sciatica I had but created it even worse on the left side.

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Do get referral to PT. It is amazing what they have for these things now. Lots of the pain is referred from tight, weak muscles surrounding the area. It is not a cure, but consistent use of the stretches helps immensely. I am on no opioids and pain managed – Etodolac, plaquenil. See if you can find a Rocabado trained PT.

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@wsh66

I came by scoliosis late in life as the result of cancer surgery. I have an intrathecal pain pump. It's a small pump surgically placed in my tummy with a catheter running up my spine. It leaks about 4 mg of narcotics directly into my spinal fluid over 24 hours. I can also take another milligram of Narcotics in 10 doses over 24 hours by means of a remote control. Narcotics delivered in this fashion are one two three hundred times more effective than drugs that you swallow and have to run through your digestive system.

I don't know if your insurance will pay for this but it is the ultimate solution for this kind of pain that's just unrelenting. The volume of narcotics is so small there are no side effects, no constipation, no drowsiness. Search under my handle, wshh66, I have written extensively about my experience with the pain pump and my experience with pain clinics. I was treated and mistreated for 20 years plus by a series of doctors who were willing to treat me and a lot more doctors who are not willing to treat me. I was accused of being a drug addict, I was treated like a criminal and I was made to feel guilty for being in pain. I became a patient of the pain clinic at the University of Minnesota. There was a process I had to go through. I had to talk to a psychiatrist I had to talk to a psychologist, a neuropathologist and a palliative care doctor. Once I cleared those hurdles I was given very large doses of Narcotics. The side effects were tough and the relief was not complete. When I had cancer I had chronic pneumonia and a lot of infections so I had to wait for one year to pass infection free before they would give me the pain pump. I've had it now for more than 3 years and have the best quality of life I've had in the last 25 years.

I would encourage you to read up on the intrathecal pump and see if you think it might be right for you. If you can find someone who will put it in for you, it's much safer than pills and you cannot overdose, you cannot get high, and you cannot give your drugs away. I hope you find an answer love and blessings.

I should explain that originally I had pain all over my body but mostly on my right side due to pinched nerves. When I had my cancer surgery they remove so many lymph nodes that I got a thing called dropped foot. All of a sudden my left leg was an inch longer than my right leg and it was causing me to fall down but after that ended basically the extra leg hammered the spine to bend out to the right which fixed the sciatica I had but created it even worse on the left side.

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So, also get a referral to PT so you keep muscles strong. May be able to improve dropped foot, and relieve other weaknesses. I have MCTD, so the complementary effect to pain meds is great.

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I have a couple of PT's I just love. What is MCTD? Thanks

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@wsh66

I have a couple of PT's I just love. What is MCTD? Thanks

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MCTD is Mixed Connective Tissue Disease. It has many of the symptoms of Lupus. Rare disease, have had it about 24 years. Mostly soft tissue – tendons, muscle etc. It is diagnosed with blood work. Those who amend their diet to non-processed and exercise seem to do better. mctdfoundation.org

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I have scoliosis also, but the deal seems to be minding my posture and keeping hips and sacrum flexible — PT really has made a difference. The basics I do are cat/cow/child/cobra yoga, clamshell stretches and piriformis stretches. Water exercise is great, too. No meds do it all. I am on Etodolac, and use THC/CBD tincture at night. Also, avoiding inflammatory foods makes a difference. ice/heat, epsom salt baths…

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@marye2 I am impressed what all you do to help your pain from scoliosis. I tried a trainer, which hurt my back, then gentle yoga, another epidural. Lastly I tried swimming class, which really make my back hurt. After going to Mayo, I had an ablation, which worked maybe up to 2 weeks. I saw a surgeon, which said I could have a fusion surgery for my degeneration which has caused my scoliosis, plus stenosis, bulging discs, etc. So finally after a year, it took longer because I had to see an endocrinologist and that took months. He put me on Tymlos to increase my bone mass and had to do the injections everyday for six week before the surgery, which the Cobid-19 and the MN government opened up elective surgery. Now finally I'm getting a fusion from T-10 to my pelvis on June 9th. But, I'm so proud of you and I hope to get more exercise once I heal.

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