Spinal Fluid Complications, Tarlov Cysts, and Ehlers-Danlos Syndrome in Adhesive Arachnoiditis
- EveBlackburn
- Jun 29
- 7 min read
Adhesive Arachnoiditis rarely travels alone. The scarring and inflammation that define AA can trigger a cascade of related conditions — spinal fluid leaks, CSF blockage, Tarlov cysts, and connective tissue disorders — that complicate diagnosis, worsen symptoms, and require their own targeted management.
This article covers the most common co-occurring conditions in the AA community, what causes them, and what resources are available. All Tennant Foundation bulletins referenced here are available to download at the end of the article.
Spinal Fluid Complications
After reviewing over 600 MRIs from persons with AA, Dr. Tennant concluded that at least half of all AA patients have experienced some form of spinal fluid seepage or leakage. The scar tissue that forms in the spinal canal can disrupt the normal flow of cerebrospinal fluid in several ways — causing leaks, seepage, or blockage — and each creates a distinct set of symptoms.
Common symptoms of CSF complications include:
Blurry vision
Ringing in the ears (tinnitus)
Brain fog and memory issues
Headaches and head pressure
Neck and shoulder pain
Nausea
Dizziness and vertigo
Nasal dripping
Facial pain
The specific symptoms depend on what type of CSF issue is occurring. Importantly, high and low spinal pressure can produce similar symptoms — which makes CSF complications particularly difficult to diagnose without careful imaging and clinical assessment.
How AA Causes Spinal Fluid Problems
Understanding why spinal fluid complications occur requires understanding what AA actually does to the spinal canal.
AA is an inflammatory, adhesive mass that entraps cauda equina nerve roots inside the spinal canal. This mass acts like boulders, logs, and dams in a creek — diverting, backing up, and slowing spinal fluid flow. The adhesive mass can also grow through the arachnoid-dural spinal canal covering, making it porous and permeable. When this happens, spinal fluid can leak outward into surrounding tissue — and conversely, fluid from the epidural space can enter the spinal canal.
Dr. Byron Stookey documented this process in 1927, noting that adhesions originating in the arachnoid layer can entrap the dural layer as well, extending the disease process beyond the inner spinal canal covering. Dr. Tennant's research confirmed these findings using contrast MRI — if AA involves the dural layer, leakage can often be seen on imaging.
Spinal fluid is not meant to leave the spinal canal. It is acidic and toxic to the muscles, nerves, tendons, and connective tissue in the surrounding area. When it leaks, the body attempts to push it toward the skin so it can evaporate. This process causes inflammation and severe pain wherever the fluid contacts tissue.
CSF Blockage and High Spinal Pressure
When the AA mass obstructs normal CSF flow, pressure builds up in the spinal canal and eventually exerts pressure on the brain. This is sometimes called intracranial hypertension. Symptoms include headaches, blurry vision, dizziness, tinnitus, and vertigo.
Acetazolamide is one of the most effective treatments for high spinal pressure in AA patients. It not only lowers pressure inside the spinal canal, eye, and brain — it also suppresses neuroinflammation. Dr. Tennant noted that in some cases its anti-inflammatory effectiveness rivals ketorolac (Toradol) and methylprednisolone. He recommended that every person with AA have a trial of acetazolamide.
Starting protocol for acetazolamide (Bulletin 69):
Begin with 125mg for two consecutive days
If no side effects, increase to 250mg once or twice daily
Trial for 10 days — if improvement, continue at 250mg two to three days per week
Stop if no benefit or side effects occur
CSF Seepage
Seepage is a slower, more gradual process than a full leak — described by Dr. Tennant as a "drip at a time" compared to a "steady stream." Active seepage can be suspected if you experience pain when pressing on the tissues around the spine, or if you get pain relief from lidocaine patch or gel. A contrast MRI is the definitive diagnostic tool.
Chronic seepage can cause:
Scarring of tendons and muscles that limits range of motion — patients may find they cannot fully extend their arms or legs or stand up straight
Indentation of tissue along the spine
Treatment for active seepage (Bulletin 19):
Anti-inflammatory agents — the same ones used in the Three Component Protocol:
Methylprednisolone
Ketorolac
Dexamethasone
Diclofenac
Naltrexone
Curcumin/turmeric
Pregnenolone
DHEA
Additional measures:
Homeopathic rubs (Traumeel or similar)
Castor oil rub under heat
Laser or radio wave therapy (Provant or similar)
Cortisone injection along (not into) the spine
Last resort: anabolic hormones
CSF Leaks
Large leaks represent a severe form of AA and require more aggressive treatment. Spinal fluid that leaks into muscles and other tissues causes significant inflammation, severe pain, and over time can cause muscles and tendons to scar and contract — limiting movement and function.
Treatment for spinal fluid leaks (Bulletin 77):
Small leaks often respond to standard inflammation suppression agents — corticosteroids, ketorolac, turmeric, diclofenac. Electromagnetic therapies including PEMF and laser appear particularly effective for small leaks.
Large leaks require:
6-Day Medrol Dose Pak as the starting intervention
Followed by tissue restoration hormones: HCG, nandrolone, DHEA, or testosterone
Ongoing Three Component Protocol — inflammation suppression, tissue restoration, and pain control
Spinal Fluid Flow Exercises
Dr. Tennant identified spinal fluid flow exercises as one of the three essential elements of AA treatment — alongside nutrition and medication. Normal spinal fluid turns over every four to six hours, and maintaining that flow is critical for lubrication of nerve roots, nutrient delivery, and clearing inflammatory waste.
The AA mass disrupts this flow. Exercises that promote movement and gentle spinal mobilization help counteract that obstruction.
Simple daily exercises (Bulletin 47):
Stand and extend arms straight up — hold for 10 seconds
Walk with arm swings
Rock in a rocking chair or porch swing
Trampoline walking or gentle bouncing
Deep breathing — hold for 5 seconds
Rub a magnet over the spine
The rocking chair deserves special mention. Dr. Janet Travell — John F. Kennedy's physician — prescribed rocking chair therapy after multiple back surgeries failed to relieve his severe pain. JFK rocked regularly right into the White House. Dr. Tennant's research provides the explanation: rocking accelerates spinal fluid flow, prevents pooling and stasis in the lower spinal canal, and helps flush inflammatory waste that accumulates when flow is impaired. Many AA patients who experience what feels like a "spinal fluid leak" may actually be experiencing stasis and pooling — and rocking can provide meaningful relief.
Tarlov Cysts
Tarlov cysts — also called perineural cysts — are fluid-filled sacs that form on the nerve roots of the spinal canal, most commonly in the sacral region. In the context of AA, they are understood to form as a result of the scarring and inflammatory process. They can range from mild thickenings to significant masses that compress nerve roots and disrupt the subarachnoid space.
Symptoms of Tarlov cysts overlap substantially with AA itself — pain, numbness, bladder and bowel dysfunction, weakness — which makes them easy to miss or attribute to the underlying arachnoiditis. Careful imaging is essential to identify them.
Treatment is complex and contested. Many physicians consider small asymptomatic cysts to be incidental findings. Larger symptomatic cysts may warrant more aggressive management, but surgery carries significant risks — particularly for patients who already have AA.
Tarlov cyst resources:
Tarlov Cyst Foundation — patient advocacy and education
Tarlov Cyst Society Europe — European patient community (private Facebook Group)
Tarlov Cyst Society of America: — Private Faceboook Group
Vigdis Thompson Foundation — Germany-based foundation dedicated to Arachnoiditis and Tarlov cysts, led by Dr. J. Peter Warnke. Consultations available for patients with both conditions. A donation is requested where possible as they are a nonprofit.
Ehlers-Danlos Syndrome and Connective Tissue Disorders
Ehlers-Danlos Syndrome (EDS) is a group of heritable connective tissue disorders caused by a genetic deficiency in collagen production. The hypermobile form (hEDS) is characterized by joints that move beyond normal range, skin fragility, and tissue that does not repair normally.
The connection between hEDS and Adhesive Arachnoiditis is more significant than most physicians recognize. In a 2024 study conducted by Dr. Forest Tennant involving 45 participants with both hEDS and intractable pain, 80% also had Adhesive Arachnoiditis. The findings were striking:
94% of participants were female
36% were bed bound most hours
The average age of first pain episode was 12.9 years — yet most weren't diagnosed with hEDS until their late 40s
As a group, the 36 participants with AA had undergone 124 surgeries and 278 epidural injections
Every single participant had both arthritis and neuropathies
50% had Tarlov cysts
41.7% had spinal fluid leaks
75% had migraines
Many participants reported that hypermobility was noticed in childhood but was dismissed as "growing pains." A diagnosis of hEDS was not made until middle age — by which time AA and intractable pain had already developed. Dr. Tennant's conclusion was direct: earlier diagnosis of EDS may lead to preventive measures that avoid the tragic consequences seen in adult life.
Patients with both AA and hEDS typically experience more rapid progression, more severe symptoms, and require more aggressive tissue regeneration and hormonal support than AA patients without connective tissue disorders.
If you recognize this pattern — childhood hypermobility, widespread pain, multiple failed procedures, and an AA diagnosis — ask your physician about hEDS screening.
What Patients with hEDS and AA Are Told
Dr. Tennant's study included an addendum of comments that participants reported being told by medical professionals. They are included here because many AA patients will recognize them:
"Nothing is wrong with you." "You don't look like you're in that much pain." "EDS doesn't cause pain." "EDS cannot cause Tarlov Cysts or AA." "You need anxiety medication." "Buck up, no one can have pain every moment of every day."
If you have been dismissed this way, you are not alone and you are not imagining it. The medical establishment's understanding of hEDS and its connection to AA is still catching up to the reality that patients are living.
EDS and connective tissue resources:
Dr. Tennant's article in Practical Pain Management: Suspecting and Diagnosing Arachnoiditis
📄 Download the Full EDS and Intractable Pain Report — Dr. Tennant, March 2024 (upload and add link)
Bulletin Downloads
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.
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