@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?

Hi. I have arachnoiditis but not to the degree of bowel/bladder incontinence. I take Indomethacin and it does help. I would encourage you to ask your doctor for this drug. It is part of Dr Forrest Tenant's protocol.

How long have you been continuously taking steroids? I have moderate arachnoiditis, not adhesive, but from what I know, steroids are a short term fix, not to be taken forever (correct me if I’m wrong). Taking long term steroids causes adrenal insufficiency, increases your risk of infection (especially with chronic colonization of your bladder and Supra-pubic catheter), behavior changes, weight gain, increased blood sugar and diabetes risk, atherosclerosis, osteoporosis, muscle wasting and weakness, stomach ulcers, cataracts, thinning of the skin, and insomnia Prednisone doses as low as 5-10 mg per day can cause all these things.

If you’ve been taking long term steroids, you shouldn’t stop them abruptly. It sounds like you know this.

@laurenseavertson
Have you had lidocaine IVs? Have they helped any?

This is what I learned about lidocaine IVs:

Lidocaine, particularly in intravenous (IV) form, is sometimes used in the management of chronic pain conditions, including adhesive arachnoiditis. Here’s a detailed look at its application, benefits, and considerations:

IV Lidocaine for Adhesive Arachnoiditis

ASPECT DETAILS
Mechanism of Action Lidocaine is a local anesthetic that works by blocking nerve signals in the body, providing pain relief.
Administration Administered intravenously, often in a controlled medical setting.
Indications Used for neuropathic pain, chronic pain syndromes, and sometimes for acute pain management.
Benefits - Rapid onset of action- Can provide significant pain relief- May reduce the need for opioids- Can improve overall function and quality of life.
Duration of Effect Effects can vary; some patients may experience relief for hours to days after administration.
Side Effects - Dizziness- Nausea- Allergic reactions- Cardiac issues (rare but serious).
Considerations - Requires monitoring during administration due to potential side effects.- Not all patients may respond positively.- May not be suitable for those with certain medical conditions (e.g., heart issues).

Lauren
I am so sorry you are going through so much. I will pray for answers and your comfort.

With all the antibiotics and steroids, have you been tested for C.Dif colitis as a cause of your bowel incontinence? Its one diagnosis with a relatively easy cure. Might be worth a shot having the test.