I have been suffering from this problem for about 8 years now. My disability lawyer was fantastic. The judge we had was so understanding. But, to treat this condition is to say the least, hairpulling mad. But, I found an awesome pain management doctor that is god sent. I went through several before finding him. I wish you luck in finding relief and if you need to vent...please feel free to contact me via this website.

Hi, Nice to meet you. There are doctors out there. May I suggest checking out these support groups on facebook. Arachnoiditis, arachnoiditis everyday and arachnoiditis together we fight. They have been quite helpful to me. Sorry we had to meet by having this in common

@bfsecurityguy I would recommend you search your area for integrative pain specialists. Mine prescribes oxytocin troches & ketamine troches for me. They work together for all kinds of pain. I have to say, they do work better than any of the other medications I've had over the years and they are also affordable. Also, a good physical therapist will be able to provide a variety of treatments. Have you ever had laser therapy? Have you seen a neurologist for this?

The Director of the FDA comments

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!!

Hi don, I'm sorry it took me so long to respond! I hope I you waited on your procedure? May I suggest to wait until you hear from Tennant. I have learned the hard way jumping to have procedures done do to pain. What state are you in to look up Dr. Pawluck so I can look him up. I know you went to the dr. but did you have the procedure or waited?

I've have AA n have been to the pain clinic. My legs go into uncontrollable muscle spasms. Pain clinic would like to put a HF10 spinal stimulation device in me. Has anyone had success with this? There is only "hope" that it will control spasms. I've had several gun shot wound (vietnam) and 7 back n neck surgeries, so why should I allow them to cut me again which they say caused the AA to begin with? Any suggestions beside pain pills?

Wow, I'm so happy for you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Wonder if it would be good for me at my advanced AA.? I hope others on connect will read this. How long does it last after you use it? What does it feel like?

Name od Dr. Tennant's Book, Adhesive Arachnoiditis, An Old Disease Re-Emerges In Modern Day Times

DEA, was awhile ago, maybe you can email him, ask him if he could recommend a Doctor for you.

Pain Dr in CA..I read an article that Tennet had retired... DEA and such were after him.. and he was in his 70s... K