Anyone here with Adhesive Arrachnoiditis

Thank you for your post. So many of us are getting these epidurals for pain. Can you tell us more. How was it detected--MRI? It is supposedly so rare.

Mine was diagnosed in March of 2024. In discussions with 3 neurosurgeons and my neurologist we’re all in agreement it probably happened during a laminectomy I had in 2019. I’ve been in constant pain along with all the other awful issues that come with it. I’m still trying to learn as much as I can about this life altering condition as there seems to be little known especially among most physicians. Dealing with the pain and just trying to keep moving seems to be the only path forward. What an awful life to look forward to!

Research Dr Forrest Tenant. He is retired but is the arachnoiditis guru. I started taking Indomethacin from his protocol. It is the only thing that reduces my pain.

Help Please. I've been in the hospital. About 3 weeks ago, lost all bowel control. I have a permanent supra pubic catheter & of course i got another drug resistant UTI Hospital was most horrible experience of my life. They refused me any pain management, while i was there. They refused to help with my steroids & told me my situation was difficult!!!. I finally left AMA. I was so sleep deprived from Decadron, no sleep in 3 weeks. I was hallucinating, screaming in pain. I am not exagerating. Can't get an appointment with a neurologist until end September. They gave me a referral for a neurologist. Earliest i can see is after Thanksgiving. I have titanium hardware from C3 thru my sacrum Hospital told me my condition too complex. Was told i would not go into shock, if stopped my Decadron. I am a retired RN & i know you can't take steroids, like pain pills. My treatment at this Honor Health Hospital, was beyond apauling Sorry, my inflammation is so severe, i can't barely walk around my apartment. I have had Arachnoiditis for a long time & did not want things to get to this stage. I got so angry, i said a few choice words to various doctors. I am sure, other people come in with multiple ailments Does anyone have any advice?? I am Medicare & Medicaid, am know pretty broke. Has anyone with Adhesive Arachnoiditis gone to a neuro rehab?? How do i prevent this from happening again. Bowel control is necessary in our society. No one wants to help. Know it's a rare condition, but i told the doctor to look it up on his computer. When i try to stop, or taper the Decadron, the pain, inflammation is so severe, i can't take it. Can hardly walk, at all

Help Please. I've been in the hospital. About 3 weeks ago, lost all bowel control. I have a permanent supra pubic catheter & of course i got another drug resistant UTI Hospital was most horrible experience of my life. They refused me any pain management, while i was there. They refused to help with my steroids & told me my situation was difficult!!!. I finally left AMA. I was so sleep deprived from Decadron, no sleep in 3 weeks. I was hallucinating, screaming in pain. I am not exagerating. Can't get an appointment with a neurologist until end September. They gave me a referral for a neurologist. Earliest i can see is after Thanksgiving. I have titanium hardware from C3 thru my sacrum Hospital told me my condition too complex. Was told i would not go into shock, if stopped my Decadron. I am a retired RN & i know you can't take steroids, like pain pills. My treatment at this Honor Health Hospital, was beyond apauling Sorry, my inflammation is so severe, i can't barely walk around my apartment. I have had Arachnoiditis for a long time & did not want things to get to this stage. I got so angry, i said a few choice words to various doctors. I am sure, other people come in with multiple ailments Does anyone have any advice?? I am Medicare & Medicaid, am know pretty broke. Has anyone with Adhesive Arachnoiditis gone to a neuro rehab?? How do i prevent this from happening again. Bowel control is necessary in our society. No one wants to help. Know it's a rare condition, but i told the doctor to look it up on his computer. When i try to stop, or taper the Decadron, the pain, inflammation is so severe, i can't take it. Can hardly walk, at all

@laurenseavertson
I am so sorry to hear of your suffering and struggles! I deal with chronic spine pain (had 3 prior surgeries) and some permanent spinal cord injury.

Are you working with a pain management clinic for treatment options? Are you regularly seeing a neurosurgeon and neurologist to keep an eye on your spine/central and peripheral nervous systems? I’m not sure how much a neurologist will help other than test for peripheral neuropathy (EMG/nerve conduction studies), small fiber neuropathy (skin punch biopsy), do brain MRI to rule out certain conditions, prescribe medications (many with terrible side effects), etc. I haven’t had much success with neurologists beyond testing, testing and more testing with no real treatment options that help.

Have you ever taken Cymbalta/duloxetine for nerve pain? Have you taken gabapentin or Lyrica? What other medications have you tried? Are you seeing a psychologist specializing in patients with chronic pain? Are you doing regular physical therapy?

Did you do anything in particular that caused the loss of bowel control? Is your cauda equina affected by adhesions and have you had any recommendations for surgery to deal with the adhesions?