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5 days ago · arachnoiditis in Brain & Nervous System

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.

Mon, Jul 15 3:34pm · arachnoiditis in Brain & Nervous System

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.

Mon, Jul 15 3:19pm · arachnoiditis in Brain & Nervous System

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.

Fri, Mar 29 10:07am · I am desperate to find a dr who treats arachnoiditis. in Spine Health

Thanks for the information.

Tue, Mar 26 3:39pm · Any Adhesive Arachnoiditis members here? in Brain & Nervous System

I don't understand why more research isn't being done for this terrible disease.

Mon, Mar 25 2:53am · I am desperate to find a dr who treats arachnoiditis. in Spine Health

Your input is very much appreciated! Everything started with the surgeon in my small town who did the first back surgery that ruined my spine. He said he would only order MR imaging at the hospital where the surgery had been done, which was because he knew he could tell the radiologist what to put, and not put, on the report. When I told the surgeon that I did not want it done there he informed me and my husband that we no longer had a doctor/patient relationship and dismissed me less than two months after the surgery had been done. This was the perfect way for him to get rid of me. No one wanted to become involved with my care, however. Primary care doctors were rude. Neurosurgeons didn't want to see me, and if they did they wouldn't tell me the truth. The look on their faces told the story, though, after they saw my imaging discs. It was so hard to keep researching what doctor to see next, and I didn't know anyone in the medical field to advise me. After travelling from TN to doctors in five other states I finally saw the websites about blacklisted patients and this 100% describes my experience. Going to doctor after doctor and dealing with the false things that were put in my records to cover up what the surgeon had done, while having debilitating pain, destroyed my self confidence.

Thank you for the information and the website. I need all the help I can get. I am going to ask some of the radiologists, who have read my reports, to give me a more detailed imaging report. In the future, when I have a new test I will ask them, beforehand, if they will provide me with all of the findings, but let me tell you this. The nurse practitioner I saw the last time in pain mgmt. said he would order a pelvic MRI. I asked him to put DX codes for cauda equina syndrome and arachnoiditis on the order and explained that the last neurosurgeon I saw, the week before, had said he could see arachnoiditis on the disc I took. (I had already given them records from a neurosurgeon stating that I have C.E.S.) He wanted to know the name of the neurosurgeon and typed it in on his computer. It was the first time I saw this man at a pain mgmt. appointment. I had previously seen a nicer woman. The man indicated that he would put the DX codes on the order, but when the scheduling clerk called she said he had put C.E.S., and not arachnoiditis. I also noticed on the prescription for my medication that he had listed four DX codes. They included C.E.S. and "meningitis", but not arachnoiditis. Meningitis is the result of infection around the spinal cord, whereas spinal adhesive arachnoiditis is typically caused by an iatrogenic injury, such as a spine surgery. There is nothing in my records about an infection, but none of the doctors will say I have arachnoiditis because they know it is caused from the first surgery I had. The surgery was done seven years ago!!

Fri, Mar 22 6:14pm · I am desperate to find a dr who treats arachnoiditis. in Spine Health

In 2016 one spine surgeon said I "probably" had arachnoiditis, but he sort of slid the comment in at the end of the office visit. I didn't know what questions to ask, but based on my previous appointments with him, he wouldn't have said very much, except to clarify that there was nothing he could do for me. Since then I have been told (after I asked if they could see it on the imaging) by three other neurosurgeons that I have arachnoiditis, and that I have cauda equina syndrome by one neurosurgeon, but they didn't mention this in the records, nor did the radiologist put it on the report. One radiologist said the diagnosis codes that the doctor put on the order would determine what information he would include in the impression. I took this to mean that unless the doctor gave the radiologist the O.K. nothing about certain things, such as iatrogenic conditions, would be on the report. The nurse practitioner ordered another sacral MRI, at my last pain management appointment, after we specifically discussed the fact that the previous imaging had severe artifacts from surgical hardware and a pain pump, and that no one had ever ordered imaging of the sacral nerve roots before. I explained that a neurosurgeon had told me, the previous week, that he could see arachnoiditis on the lumbar MRI that I took to the appointment. The nurse practitioner even asked the name of the doctor and typed it on his computer. I proceeded to tell him what the radiologist said and asked him to put arachnoiditis and cauda equina syndrome on the order. He indicated that he would do this, however, I was contacted by the person that was scheduling the MRI, who said he had put cauda equina syndrome, but not arachnoiditis, on the order. If I have the test and the radiologist doesn't see cauda equina syndrome, where will this leave me? I seriously doubt that he will say I have arachnoiditis, since none of the other ones have. Every radiologist in my area knows that surgery caused my problems. I could hear the nurses talking about this when I was lying in the MRI machine during the last test. I was approved for disability for a cervical spine problem, but I would like to find a pain management doctor that knows more about arachnoiditis. Did your doctor order MRI's for you, and if so did he put arachnoiditis on the order?

Sun, Mar 17 1:14pm · Any Adhesive Arachnoiditis members here? in Brain & Nervous System

Yes, I live in East TN and a spine surgeon caused me to have arachnoiditis and cauda equina syndrome seven years ago. I have been to many doctors who all covered up the problem. I am prescribed high doses of pain medication, but it has no effect on the sacral/anal pain that has destroyed my life. Are there really any doctors that treat these problems?