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@lisalucier

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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Replies to "Hi, @jelizabeth - I'd like to invite into this conversation members familiar with arachnoiditis or cauda..."

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.

Yes I have

I sent you a PM but am also posting this here because I think it may also help others.

I'm so sorry to hear about your pain. I can definitely relate. The first thing you need to do is go to http://www.arachnoiditishope.com and read all you can. Print the surveys, lab tests, medical protocol recommendations, and anything else you think might help the doctor to help you. First and foremost the inflammation needs to be addressed. Once that happens you will get some pain relief and you can start to manage your pain from there. Unfortunately, arachnoiditis is one of the possible risks that comes with any kind of spine surgery. Once inflammation takes hold and is not addressed things start to spiral from there. Don't get me wrong, I completely understand how you feel about the doctors because I've had 18 years of what you have described including doctors that have been rude, thought I was a drug seeker, etc. I now understand that, just like the Tarlov cysts that I have/had (I had surgery), arachnoiditis is an "incidental finding" and will not always be noted on an MRI and that most doctors have little to no knowledge about it. Those that do should definitely take heed and recommend the rheumatologist. I have arachnoiditis, most likely adhesive, but my other doctors and I believe I had it long before the surgery. The inflammation and pain has gotten worse since surgery. I am now waiting for my labs (recommended by Dr. Tennant from http://www.arachnoiditishope.com) to come back. Then I can take my MRIs, labs, and surveys to a rheumatologist. Also, don't hesitate to email questions to Dr. Tennant and his team. They are very supportive and helpful. You will also need a pain management provider that is willing to take the time to look into your condition and is willing to work with you. When you go in for you initial appt. present them with your information right away and ask them if they are willing to learn a little bit more about your condition and work with you. If not, then you need to move on to the next doctor. I found one of the most knowledgeable doctors in interventional pain management. Look for one with expertise in anesthesiology. You are also welcome to read some of my other posts for more into. Tarlov cysts and arachnoiditis go hand in hand and have a lot of similar traits and symptoms. I wish you the best of luck and hope you find some relief! Take care!

Hello I have only just been diagnosed via MRI now waiting to see Orthopedic Surgeon at end of this month. I accept the fact that more surgery could make my condition worse . My history is of Milogramme with dye, spinal injections, lumber puncture, two spinal operations that have left me with Arachnoiditis and cauda equine syndrome. Spinal surgeries were carried out in the 80’s due to ongoing pain I was given Cortisone injections in spine. Now the worst pain is in my leg and arms .

I had spine surgery with the FX Machine cutting off a little of my bulging discs to get them off of my nerve, and I knew that it could be a risk, but the pain was so bad that four months ago I had that surgery, and now after the MRI with dye contrast I learned about this Arachnoiditis that I otherwise would of never probably known anything about. I do not know if I am going to be able to find a doctor in my county in Florida where I can use my insurance for treatment. This is scary and it is stressful.

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