Anyone been diagnosed with arachnoiditis after spine surgery?

Yes. My husband had L4 five back fusion surgery a few years ago then herniated disc about six months ago. His pain has gotten worse since and he has now been diagnosed with adhesive arachnoiditis. We are trying everything we can think of, but the pain seems to be getting worse. Any thoughts or suggestions would be greatly appreciated. The pain is so debilitating.

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I know this I wish I was able to play drums again but I can’t feel my legs
to kick the bass drum or clamp the hi- hat cymbals I don’t feel hot or cold sensations.. it’s something else living with this condition 3 years now hopefully one day there will be a cure it’s a whoppin on a daily basis pain never shuts off been through it all meds, spinal cord stimulator, all kinds of therapy including laser therapy my pain just laughs at everything you throw at it’s like what’s else you got that isn’t nothing

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I am truly sorry you have been in so much pain. Could you please tell me what the medication is that you’ve been taking for four years? My husband is in a similar situation and we’re desperately looking for alternate types of pain relief.

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Hi, @jelizabeth - I'd like to invite into this conversation members familiar with arachnoiditis or cauda equina syndrome to comment on whether they had these diagnoses after L5-S1 surgery, like @peggyella @justjenna @caklady @carolinapearl53 @jseibert @skiprel1957. @johnbishop may also have some thoughts for you on a potential connection.

Have you had L5-S1 surgery, then, @jelizabeth? Have you been diagnosed with both arachnoiditis or cauda equina syndrome?

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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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I had back surgery in 2019 at Emory. It was for L4 spinal fusion with screws, pedicles etc. A pre eminent surgeon I saw in Miami prior to moving to Ga had recommended doing L3 through S1 to prevent the need later on. The neurosurgeon in Ga said the other Dr. was getting old and I only needed L4. While doing the surgery he punctured the dura and then put some form of glue on it. I found this out only after getting my records. The surgeon said the nerves would take time to heal as they were inflamed. It has now been 4 years and the AA started immediately and the nerves never got better; only worse and I still have the original pain. I cannot do any of the physical activities he promised I would be able to do after 3 weeks (golfing, biking, swimming, tennis, walking, lifting my husband's w/c, etc.) . I saw 3 other surgeons but you only have 2 yr to file a malpractice suit in Ga and then you need another surgeon to testify. With only 1 yr left I contacted countless attorneys who would not take the case. This is a corrupt system that only protects the surgeon. I am now suffering the debilitating pain of AA and it gets worse. Am considering an external tens unit as I will not permit anyone to do any further invasive procedures on my spine. God Bless you.

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