Diagnosis

This section of the website is to help persons review their symptoms and self-determine if they might have AA. It also provides guidance to medical practitioners to make a clinical diagnosis of AA so treatment can get started as soon as possible.

A Screening Test for Lumbar-Sacral Adhesive Arachnoiditis

 Adhesive Arachnoiditis (AA) in the lumbar and/or sacral region of the spine is a condition that is the result of nerve roots adhering or gluing to the arachnoid layer of the spinal canal covering due to inflammation and adhesions. When this inflammatory process happens, a typical set of symptoms occur which will both identify and separate the person with AA from those with back pain due to some other cause.

If a person with lower back pain answers yes to at least four of the seven questions in the screen below, they should be immediately evaluated by a physician to confirm a potential diagnosis of AA. Previously, AA has been considered a hopeless, untreatable disease that is progressive, debilitating and life-shortening. This perception of AA is both outdated and no longer accurate. Today, AA can be specifically diagnosed and treated. The earlier in the AA disease process that both confirmation of an AA diagnosis is determined, and treatment is initiated, the better the potential for relief and hope for eventual recovery.

  1. In addition to chronic pain, do you ever experience sharp, stabbing pains in your lower back when you twist, turn or bend?
  2. Do you ever experience bizarre skin sensations such as crawling insects or water dripping down one or both legs?
  3. Do you ever have burning, tingling, or a sensation of walking on broken glass in your feet and/or toes?
  4. Does your pain become worse while standing, sitting and/or walking?
  5. Do you have leg weakness and/or pain that radiates down one or both legs?
  6. Do you experience any bladder dysfunction such as dribbling, or difficulty when starting or stopping urination?

If you answered yes to four or more of these seven questions, you most likely have AA or some other neuroinflammatory disease of the nerve roots in your lumbar or sacral spine. Your physicians need to be informed of the results of this screening test as you need to obtain both a confirmatory diagnosis and a treatment plan that is specific for your condition.

Do You Have Neuroinflammation?

  1. Do you have periods of heat?
  2. Do you have periods of sweating?
  3. Do you feel like your body has too much electricity or “shock” at times?
  4. Do you have periods of burning in your feet, hands, pelvis, or buttocks?
  5. Do you have periods or episodes of strong feeing on you skin like bugs crawling or pin stabbing?
  6. Are you sensitive or become nauseated and dizzy in heat such as a hot summer day?
  7. Do the areas over pain sites sosmetimes become red and hot?
  8. Does your temperature rise at times?
  9. Are your pain flares accompanied by sweating and heat?
  10. Do you have periods of stabbing, shooting, or jerking pains?
  11. Do you have recurrent pain flares you can’t control?

If you answer yes to over half of the above questions, you will most likely need specific treatment for neuroinflammation.

Do you have centralized pain?

  1. Is your pain constant (never leaves)?
  2. Do you have insomnia?
  3. Do you have periods of great sweating?
  4. Do you have periods when your temperature goes up (feel hot)?
  5. Are your hands and/or feet usually cold?
  6. Do you have periods that you have difficulty reading, analyzing, or remembering
  7. Do you have periods when you can’t smell, taste, or hear?
  8. Do you sometimes have a lot of electricity (shock others, burn out lights or watches)?
  9. Are you always “fatigued” even if you get some sleep?
  10. Does some of our pain move from one location to another?
  11. Do you have jerking or tremors?
  12. Does the skin over your pain site really hurt if you touch or rub it?
  13. Does water hitting or splashing on your skin irritate or cause you pain?

If you answered yes to number one and yes to over half of the other questions, your pain has settled in your spinal cord and/or brain due to neuroinflammation.  We highly recommend a specific treatment protocol for neuroinflammation.

Categories of Severity

AA has different severities, and we divide the severity into 4 categories: (1) mild; (2) moderate; (3) severe; and (4) catastrophic. Below we list the categories with impairments and functions in each category. If you are in the mild or moderate category, you have an excellent chance of considerable recovery. In fact, you may not even require a prescription drug if you are in the mild category. If you are in the severe or catastrophic categories, you will need a full protocol with the most potent drugs, and you may even need an implanted electrical stimulator or intraspinal opioid pump to get adequate pain relief.

Mild:

  • Full range of motion
  • No back indentation or contracture
  • Normal inflammatory markers
  • No bladder impairment
  • No MRI evidence of spinal fluid leakage or obstruction
  • No hormone abnormalities
  • Can sit and stand in one position for 10 minutes

Moderate:

  • Full range of motion and walks without assistance
  • Mild to zero lower extremity weakness
  • Normal inflammatory markers
  • Some bladder hesitancy, urgency, dripping
  • No MRI or physical evidence of spinal fluid leakage
  • Mild constant pain but no need for sleep medication
  • Can sit and stand in one position for 10 minutes

Severe:

  • Some range of motion impairment and needs assistance (cane or other) to ambulate
  • Weakness in lower extremities with neurologic symptoms (e.g. burning feet, bugs crawling, jerking or other)
  • Elevated inflammatory markers and/or hormone abnormalities
  • Bladder impairment symptoms of hesitancy, urgency, or incontinence
  • MRI and/or physical evidence of chronic spinal fluid leakage and/or flow obstruction
  • Constant pain that impairs sleep
  • Can’t sit and stand in one position for 10 minutes

Catastrophic:

  • Requires assistance with activities of daily living (dressing, toiletry, eating, etc.)
  • Significant lower extremity impairment (needs walker, wheelchair, braces)
  • Bladder impairment of hesitancy, urgency, or incontinence
  • Mental deficiencies such as memory loss or reading ability
  • MRI and physical evidence of chronic spinal fluid obstruction and leakage
  • Elevated inflammatory markers and hormone abnormalities
  • Constant pain that impairs sleep
  • Can’t sit or stand in one position for 10 minutes

Protocol for the Diagnosis of Lumbar-Sacral Adhesive Arachnoiditis

I. History – Common Predisposing Conditions

  1. Pre-existing spine condition: Herniated discs, kyphoscoliosis, arthritis, osteoporosis, stenosis, spondylolisthesis
  2. Genetic/Inherited Disorders: Ehlers-Danlos/Hypermobile Syndromes, Marfan Syndrome, Tarlov cysts, Rheumatoid spondylitis, Chiari malformation.
  3. Inciting or Triggering Event: Trauma, surgery, spinal-epidural injection, electrocution, infection, myelogram, caudal block, spinal cord tumors.

II. Common Symptoms

  1. Back and buttock pain that radiates to legs
  2. Bladder dysfunction
  3. Bizarre skin sensation (crawling insects, water dripping)
  4. Burning feet
  5. Leg weakness
  6. Positional pain (worse or improved on standing/sitting)
  7. Blurred vision
  8. Leg pains, cold sensations
  9. Loss of feeling in extremities

III. Physical Findings – Non-Specific/Common

  1. Leg weakness – one side is common
  2. Pain – straight leg raising
  3. Loss touch/vibration sensation in foot, ankles, cold to the touch
  4. Restriction of range-of-motion in arms and/or legs
  5. Decreased reflexes – unilateral
  6. Pain on pressure over lower lumbar-sacral area
  7. Asymmetry of back musculature
  8. Indentation of mid-back/spine area

IV. Laboratory – Serum Abnormalities

  1. Hormone panel: cortisol, pregnenolone, DHEA, progesterone, estradiol, testosterone.  Interpretation: Low level – likely excess pain and inflammation.
  2. Inflammatory markers: erythrocyte sedimentation rate (ESR), C-reactive (CRP), Cytokine panel (leuketines, tumor necrosis factor).  Interpretation: If any elevated – likely excess of neuroinflammation.

Note: Normal blood tests do not rule out arachnoiditis or the presence of neuroinflammation.

V. Magnetic Resonance Imaging (MRI) Diagnosis of Adhesive Arachnoiditis (AA)

There are typical findings on MRI images that confirm a diagnosis if the patient has a usual history, symptoms, and physical findings of AA.

Axial Images (Head to Toe) Cauda Equina Nerve Roots+

  • Enlarged
  • Displaced
  • Clumped
  • Adhered to spinal canal covering

+These findings are due to inflammation and adhesion formation.

Sagittal Images (Lateral View) Spinal Canal of Thecal Sac

  • Dilated
  • Nerve roots enlarged
  • Spinal fluid outside canal

NOTE: MRI can be with or without contrast dye by use of new MRI techniques (e.g. Tesla).

Special Notes

To make a diagnosis of lumbar-sacral adhesive arachnoiditis, the patient should have a history of predisposing factors, typical symptoms, some physical abnormalities, and abnormal nerve root abnormalities on MRI. Laboratory testing may be normal, and MRI abnormalities, by themselves, are not sufficient for a diagnosis of adhesive arachnoiditis. In summary, adhesive arachnoiditis is a disease that is diagnosed when history, symptoms, physical findings, and MRI abnormalities are compatible.