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@jelizabeth

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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Replies to "Very sorry for the long post, but I foolishly had a L5-S1 laminectomy, in 2012, by..."

Panopaque dye (oil based): The country of Sweden stopped using this particular dye in 1948 because they knew it caused Arachnoiditis. American physicians were still using it in 1977. Doctors gave me FOUR Mylograms using this oil based dye in 1976. Additional, I was given four more Mylogram injections which were supposed to be “water soluble” type dye. I was NEVER warned about the possibility of having Arachnoiditis from any of these injections. Had L-4 disc removed with fusion from L-4 through S-1 in 1977. 1981 I was diagnosed with Arachnoiditis and have been in constant pain sense. I currently have SEVERE MULTIPLE SPINAL PROBLEMS which is causing problems including MORE pain, numbness and loss of use of some body functions. This will continue to get worse. Doctors failed to address my problems early on. I am 75 years of age. I lost all of my daily activities that I once enjoyed. Nothing to look forward too except getting worse. Not all doctors are bad. However, the bad ones give the good ones a bad name!!!!

ARACHNOIDITIS IS A PROGRESSIVE, IRREVERSIBLE AND NON OPERABLE DISEASE that most doctors refuse to address.

These preventable horror stories are the worst.
I'm so sorry.

This so sounds like my story. Same surgery but I had fusion from T5 to S1. My doc said I can do no more for you. Just found out by new imaging this week and don't know where to turn for honest answers

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