Anyone been diagnosed with arachnoiditis after spine surgery?

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 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?

@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.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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.

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.

Yes, I am battling that now, and trying to get an appointment at Mayo in Jacksonville. They won't take appointments.

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.

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.

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.