Mayo Clinic Connect
Has anyone been diagnosed with arachnoiditis or cauda equina syndrome after a L5-S1 surgery?
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.
I cringed reading your story. So sorry you have had to go through this terrible pain. It is all about “protecting the doctor” I was in a situation in a similar way and was “passed the buck on” as they are saying. I truly can feel your pain. I just wanted you to know I really truly feel for you. It is so unfair what you have been through. I am right there with you.
Thanks for your kind words. Not that I would want anyone to have health issues, but it helps to know that other people can relate to what I have experienced and know that doctors do always protect each other first and foremost. I hope your health was not permanently impacted.
Unfortunately my health has been effected. I am pretty sure permanently.
My sincere apologies. I have read your posts and you have been through a lot of unfair treatment. Doctors are terrible people, evidently, unless you are rich. Is pudendal neuralgia your final diagnosis or did you manage to find a doctor that would tell you more? I have another LONG story if you have time to read it. A new gynecologist got my hopes up last year. She said she also had training in pain management and a degree from Boston, and that I could have a pudendal nerve problem, so I went on another wild goose chase, this time to Dr. David Prologo at Emory in GA. I had spoken to his office and my PCP had sent records. I was supposed to have some kind of diagnostic injection, and then cryotherapy. Dr. Prologo spent five minutes with me and said my problem sounded "central" and that he was sure the injection would not work. His "secretary" (that had told me to come) suggested that I let them make copies of my discs and said she would give them to one of the radiologists that specialized in spinal nerve injuries, but I never heard a word, even after leaving a message four weeks later. I don't know if you have seen anyone for pudendal neuralgia, but Dr. Prologo would probably look at your imaging if you sent it. I also know of a lady from Knoxville that had levator ani syndrome and went to a doctor in Boston (retired now) who performed a successful surgery. Her recovery has been long, but she is much better now. I didn't mention in my other post that the anal pain I have had for seven years was miraculously gone after the my last back surgery, but the area felt "iffy" like if I bent over or moved too fast the pain would come back. I had worse right leg and foot weakness, and my toes drug on the floor three weeks later. I fell on my knee. It wasn't a bad fall, but I could feel the anal inflammation returning and sure enough the same pain was back by the following day. I wanted to kill myself. I had to go back to Charlotte and see a physician assistant. He did ONE X Ray and that was it. He finally agreed to do a MRI on the stand up machine, but I had to wait for a month to get in. I received a call from an assistant who said I should not wait this long because there might be a problem, but she wouldn't tell me what it was. I had a traditional MRI, without contrast, and didn't show anything to explain the anal pain. It did confirm that the nurse in the hospital had not removed all of the surgical drain, which showed up on the X Ray and the doctor was able to see all along. The MRI protocols were, therefore, not to visualize L5-S1, they were to see the surgical drain. The physician assistant had put in my records that he didn't tell me about the drain because the doctor wasn't aware. I don't think the radiologist saw it the day I was there. I had to go back and have the drain removed in day surgery by the neurosurgeon. He had said before doing the back surgery that he thought surgery might help my pain at L5-S1, but after the fall he said he had no idea why the pain was "temporarily gone". What a turn around, but he wouldn't talk to me about it, so I don't know if inflammation caused the pain to return. I had another fall, on concrete, two weeks after the first fall, which has caused a huge spread of muscle and nerve pain, and numbness in my feet. I had a pain pump put in, but it isn't helping at all and I suffer constantly. My insurance changed and I now have the only kind the doctor doesn't accept. I am having to pay for the office visits and pain pump refills until I meet the out of network deductible. I had another MRI but it couldn't be done on the 3 Tesla, because of the pain pump. Results-possible fluid at the insertion site and images of "severely reduced quality". The pain pump rep. failed to tell me that the pain pump would cause a lot of artifact when I asked if I would still be able to have MR imaging, and I won't know until my follow up what, if anything, will be done about possible fluid collection. If you managed to read all of this THANK YOU.
Yes, I am battling that now, and trying to get an appointment at Mayo in Jacksonville. They won't take appointments.
I am so sorry I missed your post way back in Feb. I hope you are doing somewhat better? How painful. I feel for you. Wow. My story is a long one also and I got jerked around by my initial primary Dr. and pain management Dr. and many many other Dr’s in a close tight circle and they ruined my life by not being truthful and I fought for the truth and I proved it was pudendal Neuralgia but it took over three years of testing and Dr’s passing me around to get my painful needed results and now I am on Medicaid because the state did not except all the dr’s diagnosis of “spasm” when I filed for disability when I had to leave my job three yrs ago. It took me so long to fight this. All this Dr’s should be ashamed of themselves. Don’t Dr’s sign a code of ethics when they become Dr’s?
I would check with your PCP or your insurance co. Mayo in Rochester maybe a good try.
Liked by Lisa Lucier, Connect Moderator
@jelizabeth I read your story and wanted to let you know that Myofascial release can help pundental nerve pain in some patients according to information on the MFR website and information from John Barnes, the creator of the MFR methods. We have a discussion with a lot of links and information and videos that show a therapist treating a patient. MFR can be a long process to work through and release layers of tight tissue and fascial scar tissue that can be caused by surgeries. I do a lot of MFR work because I have thoracic outlet syndrome and I am a spine surgery patient. Here is the link to the discussion. You may want to look through all the pages. The first pages have lots of information followed by discussions with Connect members who are interested in or have tried MFR with physical therapy. I don't know if having a pain pump would be a contraindication for MFR work because of the implanted connections, but that would be a question for a MFR therapist.
Hi, @leigho55 – good to hear from you. Sounds like you were a real advocate for your own health and getting to an appropriate diagnosis, though it took some time and struggle.
How is your pain level currently?
I hope you got three years of back pay! In my area all the doctors are in a tight circle or at least it seems this way. We only have Tennova and Covenant after all the different hospitals have merged, and the Southeast is the worst place to live for healthcare.
After having yet another lumbar surgery, the neurosurgeon said I have arachnoiditis. He was looking at the same myelogram that I took before the surgery was done. A pain pump was put in by my PM doctor and a seroma formed two weeks later. I had asked three or four doctors to do new MR imaging before the pump was put in, but the only one who ordered it was a neurologist whose office failed to order the test with neurography as the doctor had said. My PM doctor had rushed up the appmt. to put the pain pump in before the end of the year, because my insurance was changing to Blue Cross, which he did not accept. I didn't know that he was sending me to Chattanooga for another doctor to put the pump in, who did accept Blue Cross. I didn't want to cancel at the last minute, but if I had cancelled I wouldn't be sitting here with a pain pump that doesn't control the pain, and on top of that there is, now, too much artifact from the pain pump, hip implant, and surgeries to see what the problem is. Do you know, or does anyone know, if my insurance company will remove the pain pump if the PM doctor tells them it doesn't help and that I need imaging to find out what is causing the seroma and all the pain? It is possible that my pain could be coming from Tarlov cysts.
I hope you are feeling better. Thank you.
Thank you Jennifer. I think pudendal nerve pain was another rabbit hole that one of my doctors sent me down. It looks like arachnoiditis is my problem, but I wasn't told this for seven years after the surgery that caused it. I only found out then, because I went out of state and had another back surgery for stenosis. The neurosurgeon didn't tell me before surgery, though, he waited until after it was done and then said the myelogram that I took to the first appointment showed nerve clumping and this means I have arachnoiditis. A pain pump was put in that doesn't help, which may be due to the fact that I developed a seroma. There are, now, very severe artifacts from the pump, a hip implant, and surgical hardware. I was sent for a purse string procedure to remove the seroma. My new PCP said the procedure would cause worse pain and the seroma would come back, and this is exactly what happened. Doctors have ruined my life. I live in constant pain and I don't know for sure what is causing the pain. (It could also be coming from Tarlov cysts because my first MRI reports said I had sacral Tarlov cysts) Someone told me they have my exact symptoms and that their pain is from Tarlov cysts. They had been to Dr. Feigenbaum.
I am so amazed with all this that I am reading and what you all are going through. No one seems to be any better with all this testing and pain pumps and experimental this and that. I am told my next step for another one of my issues is burning my pudendal nerves and a big NO to that. Right now I am treated like I have a disease at any Dr’s I think I have a red X by my name and a note or a code only Dr’s can read. I know a lot of medical stories are out there and we are a needle in a haystack but we are human beings and we deserve better than this. A neurosurgeon 5 yrs ago missed something in my back that should of been corrected during surgery and was not. I was in continued pain. Dr. said I would have to start over again from the beginning again to find out what was wrong. Well many injections and procedures and pain here I am. I could go on and on but I am tired right now. hope you are well! glad to have people listening and talking.
I wouldn't agree to Pudendal nerve burning either. It's hit and miss, as you said, with this and that after they ruin us the first time.
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