Anyone been diagnosed with arachnoiditis after spine surgery?

I can’t handle gabapentin at all and I’m taking three times a day 15 mg of morphine. I just keep moving and make sure I exercise every day and do a lot of walking or riding a bike as you’ve got to keep your legs moving up is in your lumbar area.

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Yes, and caused by bad surgery which getting worse as years go by.

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Very sorry for the long post, but I foolishly had a L5-S1 laminectomy, in 2012, by an unskilled ortho. surgeon in my small town. After the surgery I had extreme sacroanal pain and lower extremity weakness and atrophy that has gradually continued and is now severe. PCP's and spine doctors who ordered imaging did not discuss important information on the reports that said I had edema of the lower spine, sacrum, and paraspinal muscles, even though they knew I was having extreme pain, and neurological decline. Some of them went on and on about the dangers of spine surgeries as though it was my fault that I was having major problems. The neurologists I saw did not do appropriate blood work that would have shown inflammation, do a nerve biopsy, or examine me. It was all about protecting the surgeon. I was told by a pain mgmt. doctor and a neurosurgeon, in 2016, that I had severe L3-L4 stenosis and that I needed surgery. I went to another neurosurgeon for a second opinion. He would not operate because of the previous surgery. He was rude and did not want to be involved with someone like me with so many problems. He sent me to an interventional pain management doctor, who worked at the same facility. This doctor wanted to immediately put in a spinal cord stimulator. He was arrogant and became angry when I told him that my pain management doctor had advised me to have a pain pump evaluation and not get a spinal cord stimulator, because I had clumped nerve roots, and that the only reason I had not already done this was because my pelvis tilted after the laminectomy and I had to have hip replacement surgery, which was done wrong, and that it took almost two years to find an orthopedic surgeon to appropriately diagnose the condition and do a revision surgery. The arrogant doctor said he would order a myelogram, which surprised me because I had asked a doctor in my small town to order a myelogram after the surgery, but he refused and said this was a dangerous test. I thought the reason for this was that he was protecting the ortho. surgeon that had performed my surgery. None of the spine surgeons told me that I had clumped nerve roots, but one had said I "probably" had arachnoiditis. He ended the appointment before I could ask questions. The myelogram report said there was nerve root clumping. I don't suppose the arrogant interventional pain mgmt. doctor was expecting this. My follow up was with a nurse practitioner instead of him. An ER doctor was kind enough to tell me where I could go to find a good neurosurgeon, four hours away, to get me away from the biasedness I was facing. I went to Charlotte and had surgery for stenosis, because they said I would have more serious neurological decline and possibly be in a wheelchair if I waited any longer. After the surgery I got my records. They had documented that I have chronic progressive cauda equina syndrome based on pelvic MR imaging that I brought to the appointment. At my last appointment there I saw the chief of neurosurgery, who said I also have arachnoiditis. It is sad that all of the spine doctors in my area, and in nearby areas, declined to mention cauda equina syndrome and arachnoiditis, even though anyone could visibly see the severe abnormal atrophy in my legs. I kept wondering why MRI reports did not mention the problems. Last year a radiologist said all of the findings about my spine condition would not be in the report. He said only the ones pertaining to the diagnosis codes on the order would be included. This means that if doctors don't want you to find out about what a surgeon did, during a surgery, you have no chance of finding out, unless you can find another doctor to put the necessary diagnosis codes on the order. Sorry to go on and on, but my health was taken away by a surgeon incapable of performing a decent surgery. I have endured severely uncontrolled pain for seven years now and been repeatedly lied to and demeaned by the medical field. Electronic Health Records are not to protect the patient. You find this out when you have an iatrogenic injury.

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This is like living in hell here and now. Had an artificial disc ( L5-S1 )put into my back in 2005 and it got loose in 2009. Had to have it fused and been on pain meds ever since. Surgeon dropped me after a few years and said he could not help me any more. Told me to find a doctor closer to my home. It took 4 years to get a doctor to tell me what was going on in my back. Took more meds to kill the pain than anyone should have to take. When gov stepped in regulating how much you could take I thought I was in a mess. Found a doctor that put me on a medicine used to get folds of drugs and it works well. Been on it 4 years and managing but loosing strength in my legs. There are meds for reducing scar tissue in hands maybe one day it will be for backs also. Some say make peace with your pain. I say—Make Peace with God- No pain in Heaven. Jesus paid it all.

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This is like living in hell here and now. Had an artificial disc ( L5-S1 )put into my back in 2005 and it got loose in 2009. Had to have it fused and been on pain meds ever since. Surgeon dropped me after a few years and said he could not help me any more. Told me to find a doctor closer to my home. It took 4 years to get a doctor to tell me what was going on in my back. Took more meds to kill the pain than anyone should have to take. When gov stepped in regulating how much you could take I thought I was in a mess. Found a doctor that put me on a medicine used to get folds of drugs and it works well. Been on it 4 years and managing but loosing strength in my legs. There are meds for reducing scar tissue in hands maybe one day it will be for backs also. Some say make peace with your pain. I say—Make Peace with God- No pain in Heaven. Jesus paid it all.

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Yes, a neurosurgeon from Northwestern took an updated MRI and saw it and prescribed an internal tens unit to stop pain. I did not, so he does not want to see me again. It's been verified by other doctors at Loyola. The neurologist at Northwestern did absolutely nothing for me except testing for polyneuropathy which I have, and he only concurred what other neuros told me. So .. here I am not rich enough to afford alternative medicine.. I love Dr. Tennant. Just recently talked to him. Also, Medicare does not have any help for us either, because they will not cover anything we can try. It,s a loose loose kind of a deal . Trying to get put back on hydroxychloriquin again for some relief. But that's like banging your head against the wall. Lord take me?

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