Tarlov Cyst Multisystemic Associations

Living with Tarlov Cyst Disease can feel like you're living within a puzzle full of missing pieces. For many patients, symptoms reach far beyond low back or pelvic pain. Burning limbs, dizziness, brain fog, bowel or bladder dysfunction, and vision changes may seem unrelated—until you look deeper.

Tarlov Cyst Multisystemic Associations

Tarlov Cyst multisystemic associations are increasingly evident through research and patient experiences. Tarlov Cyst Disease is not always an isolated condition. It frequently overlaps with Small and Large Fiber Neuropathy, Adhesive Arachnoiditis, Intracranial Hypertension, and Connective Tissue Disorders such as hypermobile Ehlers-Danlos Syndrome (hEDS), Marfan's and Loeys-Dietz Syndrome (LDS). These overlapping conditions often help explain the broad-reaching, seemingly unrelated symptoms experienced by patients.

These Conditions May Coexist With Tarlov Cysts:

• Small Fiber Neuropathy (SFN):

• Burning, tingling, or stabbing pain (hands, feet, face)

• Allodynia (pain from light touch)

• Abnormal sweating, heat/cold intolerance

• GI dysfunction, heart rate variability, brain fog

  
  

• Large Fiber Neuropathy:

• Numbness or vibration in limbs

• Muscle weakness, cramps

• Loss of balance

• Adhesive Arachnoiditis:

• Burning spinal pain

• Radiating pain to legs or arms

• Bowel/bladder dysfunction

• Crawling sensations, spasms, fatigue after exertion

• hEDS (Hypermobile Ehlers-Danlos Syndrome):

• Joint hypermobility, frequent dislocations

• Widespread musculoskeletal pain

• Dysautonomia, GI issues, fragile skin

• Intracranial Hypertension:

• Head pressure, visual changes

• Pulsatile tinnitus

• Headaches worsened by lying down or straining

• Papilledema (optic nerve swelling)

Common Symptoms Seen in Tarlov Cyst Disease:

• Tailbone, pelvic, or low back pain (worse when sitting)

• Radiating nerve pain below the cyst location

• Bladder or bowel dysfunction

• Sexual dysfunction or genital pain, which may develop into Persistent Genital Arousal Disorder (PGAD)

• Numbness, tingling, or buzzing sensations

• Head pressure,

• Tinitus, Pulsatile Tinnitus

• Vision changes or eye pressure

• Orthostatic intolerance (feeling worse when standing)

• Burning pain, especially in the spine and limbs

• Poor temperature regulation or excessive sweating

Why This Matters

Many medical professionals overlook the connection between these symptoms because traditional training emphasizes treating conditions in isolation. Additionally, much of the relevant information stems from emerging research that hasn’t yet reached standard practice. For patients living with Tarlov Cyst Disease and related conditions, recognizing these patterns can open the door to earlier diagnosis, more targeted testing, and more effective care.

We need to move away from dismissing Tarlov Cysts as "incidental findings" and instead ask: "What if these cysts are part of a broader systemic or neuroinflammatory process?"

Patients can help bridge this gap by sharing current research with their providers. For example, a recent 2023 study published in the Journal of Pain Research found that over 60% of Tarlov Cyst patients also had confirmed Small Fiber Neuropathy.

Link to the full study: https://www.dovepress.com/high-prevalence-of-small-fiber-neuropathy-in-patients-with-tarlov-cyst-peer-reviewed-fulltext-article-JPR

Be Your Own Advocate, and always remember that there are many "possible" Tarlov Cyst Multisystemic Associations

If you live with Tarlov Cyst Disease and have symptoms beyond the spine or sacrum, don’t accept the common dismissal that suggests your symptoms are "all in your head."

🧪 Seeking Answers? Here's What to Ask For:

If you're experiencing widespread symptoms that don’t add up under a single diagnosis, it’s time to consider comorbidities often seen in patients with Tarlov Cyst Disease. Use the list below to guide discussions with your healthcare provider:

🔹 Small Fiber Neuropathy (SFN)

Ask for a skin punch biopsy, typically performed at a neurologist’s office or neuromuscular clinic. This test analyzes small nerve fiber density in the skin — most often taken from the thigh and lower leg — and can confirm small fiber damage even when standard nerve tests appear normal. A result showing reduced nerve density or structural abnormalities can explain burning pain, tingling, or temperature sensitivity.

🔹 Large Fiber Neuropathy

Request nerve conduction studies (NCS) and electromyography (EMG). These are electrical tests used to evaluate motor and sensory nerve function. They can detect demyelination or axonal damage affecting large nerve fibers, helping to explain symptoms such as muscle weakness, numbness, or coordination issues.

🔹 Adhesive Arachnoiditis (AA)

Advocate for a high-resolution MRI of the full spine, ideally with contrast. Adhesive Arachnoiditis is a chronic inflammation of the arachnoid membrane, often missed on routine imaging. Look for telltale signs such as clumped nerve roots, empty thecal sac sign, or scarring in the cauda equina. This condition can cause severe pain, mobility issues, and autonomic dysfunction.

🔹 Intracranial Hypertension (IIH)

Two options may be considered:

• A lumbar puncture (spinal tap) to measure cerebrospinal fluid (CSF) pressure and analyze composition. Elevated opening pressure may point to IIH.

• An optic nerve exam or ocular coherence tomography (OCT), often done by a neuro-ophthalmologist, can detect papilledema (optic nerve swelling) caused by increased intracranial pressure.

🔹 Connective Tissue Disorders (CTDs)

Ask for a genetic consultation or clinical evaluation by a geneticist or rheumatologist. Diagnosis of conditions like hypermobile Ehlers-Danlos Syndrome (hEDS) or Marfan Syndrome may be clinical, based on family history and a physical exam — but genetic testing is also available for some forms. Symptoms such as joint hypermobility, skin fragility, and vascular complications may all point to an underlying CTD.

These tests are not "extras" — they are medically valid ways to identify treatable contributors to your suffering. The more you know, the more confidently you can advocate for answers and a path toward relief.

Are you curious about the latest research on Tarlov Cyst Disease?

Explore our Medical Professionals tab on our website to access a growing collection of peer-reviewed studies and evolving scientific insights, which can be found here - File Share

www.tarlovcystsociety.com

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#TarlovCystDisease, #SmallFiberNeuropathy, #AdhesiveArachnoiditis, #IntracranialHypertension, #hEDS, #RareDisease, #ChronicPain, #Dysautonomia, #Neuropathy, #EDS, #PatientAdvocacy, #NervePain #TarlovCystSociety