If Your Arachnoiditis Is Getting Worse: Steps to Take When You're Deteriorating

Adhesive Arachnoiditis is a spinal canal inflammatory disease that can flare or progress at any time. Some periods of worsening are temporary flares. Others signal genuine progression — and knowing the difference, and what to do about it, matters enormously.

If you believe your AA is getting worse, this article walks you through the steps Dr. Forest Tennant recommended in Bulletin 66 (October 2021), supported by the blood testing protocol from Bulletin 57 and the protocol review guidance from Bulletin 68. All three bulletins are available to download below.

Step 1 — Identify Your Type of Deterioration

Before doing anything else, get specific about what is changing. Dr. Tennant identified two distinct types of deterioration, each pointing to different problems:

More impairments:

• New or worsening weakness

• Bladder or bowel dysfunction

• Balance problems

• Difficulty walking

• Jerks or tremors

More pain:

• Higher baseline pain levels

• More frequent or severe flares

• Increased burning or stabbing sensations

You may be experiencing one type or both simultaneously. Being specific helps you and your physician identify whether the primary driver is neurological progression, uncontrolled inflammation, hormone deficiency, or a combination.

Step 2 — Get Blood Tests

Deterioration in AA frequently has measurable biological causes that show up in bloodwork. Dr. Tennant recommended testing in two categories:

Hormones:

• Cortisol

• DHEA

• Pregnenolone

• Testosterone

• Optional: progesterone, estrogen, prolactin

Inflammatory markers:

• ESR (Erythrocyte Sedimentation Rate)

• CRP (C-Reactive Protein)

• Cytokines

• Optional: myeloperoxidase

What the results mean:

A hormone deficiency can cause increased impairments, increased pain, or both. Chronic pain itself depletes the endocrine system over time, so deficiencies are common in AA patients and often go undetected.

An elevated inflammatory marker means inflammation is not adequately controlled and calls for a more aggressive approach to suppression.

Dr. Tennant recommended blood testing every 3 to 6 months for AA patients, and monthly if an abnormality is found until it returns to normal. Download Bulletin 57 for the full blood test reference sheet to bring to your physician.

Note: Cortisol will read low if you are already taking a corticosteroid — account for this when interpreting results.

Step 3 — Review Your Three Component Protocol

Dr. Tennant strongly recommended doing this review with a trusted friend or family member rather than alone. When you are in pain and deteriorating it is hard to be objective about your own treatment.

Go through each component honestly:

Component 1 — Inflammation suppression: Are you taking your anti-inflammatory medications consistently? Has your dosing slipped? Are there new inflammatory triggers — illness, stress, physical strain?

Component 2 — Tissue regeneration: Are you maintaining your hormone support, supplements, and physical movement? Spinal fluid flow exercises — rocking, walking, stretching, deep breathing — are easy to abandon when you feel worse, but they are most important when things are declining.

Component 3 — Pain control: Is your pain adequately managed? Uncontrolled pain itself worsens inflammation and creates a cycle of deterioration. If pain control has slipped, that needs to be addressed directly.

Shore up any component that is deficient before concluding that your overall protocol has failed.

Step 4 — Therapeutic Trials

If reviewing and strengthening your protocol doesn't produce improvement, Dr. Tennant recommended working through some targeted medical trials to identify what might help. Options include:

• Medrol® 6-Day Dose Pak — see our full article on the Medrol Dose Pak

• Ketorolac 30 to 60mg for 1 to 3 days

• Methylprednisolone injection 20 to 30mg

• Injection or suppository of hydromorphone, Demerol®, or morphine

• Injection of estrogen or testosterone

These trials serve two purposes — they may provide relief, and they provide diagnostic information. If a Medrol Dose Pak produces significant improvement, for example, that confirms uncontrolled inflammation as the primary driver and guides the next steps in treatment.

Step 5 — Consider Intractable Pain Syndrome

If your pain is constant and not responding adequately to your current protocol, you may be experiencing what Dr. Tennant called Intractable Pain Syndrome. This level of pain typically requires targeted treatment across three receptor systems:

• Endorphin system: naltrexone, opioids, oxytocin

• GABA system: gabapentin, pregabalin (Lyrica®), diazepam (Valium®), baclofen, alprazolam, pure GABA, valerian root

• Dopamine/norepinephrine system: phentermine, Mucuna, methylphenidate, dextroamphetamine, amphetamine salts (Adderall®)

This level of pain management requires close physician involvement and careful titration. It is not something to self-manage.

Step 6 — Screen for Ehlers-Danlos Syndrome

If you are experiencing progressive deterioration — particularly in middle age — consider screening for a genetic connective tissue disorder of the Ehlers-Danlos type. EDS is genetically programmed to cause deterioration over time and is more common in the AA population than previously recognized.

Patients with both AA and EDS typically require more aggressive tissue regeneration, nutritional support, and hormonal measures than AA alone. Visit the Arachnoiditis Hope website for a screening resource.

Before Trying New or Risky Treatments

If you are considering new interventions — stem cells, epiduroscopy, spinal cord stimulators, intrathecal pumps, nerve ablation, or other experimental approaches — Bulletin 68 is clear: get your Three Component Protocol solid first.

Dr. Tennant's position was direct. These interventions may reduce but will not eliminate your pain and impairments. After any such treatment you will still need a protocol. And if the new treatment doesn't help — or makes things worse — you need a solid foundation to fall back on.

Review your protocol, address any deficiencies, and stabilize before pursuing anything new or risky.

📄 Download Bulletin 66 — Steps to Take if You Are Deteriorating📄 Download Bulletin 57 — Blood Tests for AA📄 Download Bulletin 68 — Protocol First, Then Try New Treatments📄 Find an AA-aware physician

This article is for educational purposes only and does not constitute medical advice. Always consult a qualified physician before making changes to your treatment plan. See our Disclaimer.