Tarlov Cyst Disease, also known as perineural cysts, is a rare condition where cysts filled with cerebrospinal fluid develop on the nerve roots near the spinal cord. Symptoms can include pain, numbness, and weakness in the lower back, legs, and feet.

Diagnosing Tarlov Cysts involves reviewing medical history, conducting a physical examination, and using imaging studies like MRI or CT scans. A specialized imaging technique called CT myelography and a spinal tap to analyze cerebrospinal fluid may also be required for a definitive diagnosis.

The symptoms of symptomatic Tarlov cysts can vary greatly depending on where the cyst(s) are located along the spinal cord. Here are common symptoms based on the location of the cysts:

Sacral/Lumbar Region Cysts:

• Pelvic Floor Issues: Numbness in the pelvic floor area.

• Sitting Difficulties: Sensation of “sitting on a rock,” causing discomfort.

• Low Back Pain: Aching pain and nerve pain often described as "lightning bolts" radiating to the hips and down the legs.

• Numbness and Tingling: Various places depending on the nerves affected.

• Strange Sensations: Feelings such as bugs crawling on the skin, needles or pinpricks, and the sensation of ice melting.

• Pressure Sensation: Severe pressure over the sacrum.

• Bowel and Rectal Issues: Sharp pain in the rectum, bowel incontinence, diarrhea, and/or constipation.

• Bladder Issues: Incontinence, leaking, or retention.

• Sexual Dysfunction: Painful intercourse during or after, and Persistent Genital Arousal Disorder (PGAD), which can be completely disabling.

Cervical Region Cysts:

• Headaches and head pain.

• Neck Pain and Stiffness: Discomfort in the neck area.

• Dizziness or Blurred Vision: Especially when turning the head.

• Shoulder, Arm, and Hand Pain: Pain, weakness, burning, and stiffness in these areas.

• Burning or Freezing Sensations: Particularly in the fingers.

• Numbness and Tingling: In the hands or feet.

Thoracic Region Cysts:

• Mid Back and Chest Pain: Tightness, burning, weakness, or pain in these regions.

• Increasing back pain when moving the arms in repetitive motions (dependent on cyst location).

• Skin Sensations: Similar to bugs crawling, pins and needles, and ice melting.

• Notalgia Paresthetica: A specific itch/numbness in the mid-back area, which can progress to a deep ache or pain.

• Heart Attack or Stroke-Like Symptoms: Known as "Cervical Angina," where the nerve sends pain signals to the heart. (If you experience these symptoms, seek immediate medical attention to rule out life-threatening conditions.)

Note: These are not all possible symptoms but provide a broad overview of different areas affected by Tarlov cysts.

Not all Tarlov cysts cause problems.

In fact, many are discovered incidentally on imaging and never lead to symptoms. But for those with symptomatic Tarlov Cysts, the difference is life-altering.

To determine whether a cyst is symptomatic, healthcare providers must correlate clinical symptoms with imaging findings. This means looking at both where the cyst is and what the patient is experiencing.

Here’s how symptomatic cysts are typically identified:

Key Signs of a Symptomatic Tarlov Cyst:

1. Pain patterns that match cyst location:

• Persistent or positional pain at or below the level of the cyst

• Pain that worsens with sitting, standing, walking, or bearing down

• Pelvic, perineal, or radicular (nerve) pain in the affected region

2. Neurological symptoms:

• Numbness, weakness, or altered sensation in the nerve root distribution

• Bladder, bowel, or sexual dysfunction (especially in sacral cysts)

3. Imaging that shows cyst characteristics:

• Cyst size, nerve root displacement, or bony erosion

• Cysts located at levels that match the patient’s symptom profile

4. Confirmatory testing (if needed):

• Selective nerve blocks or cyst aspiration may be used to confirm the cyst is causing the symptoms

Symptom correlation is essential. A cyst can be large and still remain asymptomatic, or small but press on a critical nerve root, causing significant dysfunction.

Download our Diagnostic Poster For a complete overview, download and print our evidence-based Diagnosing & Testing for Symptomatic Tarlov Cysts guide to share with your medical care team:

Medical research on the treatment of symptomatic Tarlov cysts suggests several approaches, although consensus on the optimal treatment is still evolving due to the variability in symptoms and presentations among patients. Here are some commonly considered treatment options:

Many cases of Tarlov cysts are asymptomatic or mildly symptomatic and may not require active intervention. Conservative measures such as pain management (e.g., NSAIDs), physical therapy, and lifestyle modifications (e.g., avoiding heavy lifting) may be recommended initially.

Pain Management: For ongoing pain management, various medications, including neuropathic pain medications (like gabapentin or pregabalin), may be prescribed.

Interventional Pain Management: For more severe symptoms, interventional pain management techniques can be considered.

These may include:

• Image-guided Aspiration and Injection: Draining the cyst and injecting a substance (such as a fibrin sealant or corticosteroid) to shrink the cyst or relieve pressure.

• Percutaneous Fibrin Glue Injection: This technique aims to seal the cyst to prevent fluid re-accumulation.

• Cyst Fenestration and Surgical Ligation: Surgical techniques involve exposing the cyst, draining it, and then either fenestrating the cyst wall or surgically closing off the connection to the spinal subarachnoid space to prevent fluid accumulation.

Microsurgical Decompression: Some studies advocate for microsurgical techniques to decompress the cyst and relieve pressure on nearby nerves. This approach is more invasive but may be considered when conservative and less invasive options have failed.

Multidisciplinary Approach: Given the complexity of symptoms and treatment options, a multidisciplinary approach involving neurosurgeons, pain management specialists, and physical therapists may be beneficial to tailor treatment to the individual patient.

It's important to note that the choice of treatment depends on factors such as the severity of symptoms, the size and location of the cyst, and individual patient characteristics. Therefore, a thorough evaluation by a healthcare provider specializing in spinal disorders is essential to determine the most appropriate treatment plan for symptomatic Tarlov cysts.

The risks associated with Tarlov Cyst treatments vary based on the chosen approach. Conservative options like pain management and physical therapy have minimal risks. Surgical interventions, such as cyst drainage, fenestration, or removal, carry potential risks like infection, nerve damage, spinal fluid leakage, and cyst recurrence. Patients should discuss these risks thoroughly with their healthcare providers before deciding on a treatment plan.

The cost of surgery to treat a symptomatic Tarlov cyst can vary widely depending on several factors:

1. Location: The cost can differ significantly based on the country and region where the surgery is performed. Healthcare costs in the United States, for example, tend to be higher compared to many other countries.

2. Number of Cysts being treated and their complexity: The cost of surgery will also be determined based on the number of cysts being treated and the difficulty and duration of the surgical treatment.

2. Hospital or Clinic: The specific hospital or clinic chosen can impact the cost. Larger, specialized hospitals might charge more than smaller facilities.

3. Surgeon's Fee: The surgeon's fee will also contribute to the overall cost. Highly experienced surgeons or those working in prestigious medical centers may charge more.

4. Type of Surgery: There are different surgical approaches to treating symptomatic Tarlov cysts, such as cyst drainage, cyst fenestration, or more extensive procedures involving nerve decompression. The complexity of the surgery will affect the cost.

5. Insurance Coverage: Whether you have health insurance and the extent of coverage will influence your out-of-pocket costs. Some insurance plans may cover a portion or all of the surgery costs, depending on the terms of the policy.

6. Additional Costs: There may be additional costs such as anesthesia, hospital stay, diagnostic tests, and post-operative care which need to be factored in.

Keep in mind that any surgical complications will likely affect the final cost of surgery.

To get an accurate estimate, it's best to consult with a healthcare provider or a specialist who can provide details specific on your situation. They can give you a breakdown of potential costs and discuss any insurance coverage that may apply. Feel free to consult with multiple surgeons if this opportunity is available to you, as fees will differ depending on many factors.

The treatment of a symptomatic Tarlov cyst typically involves a multidisciplinary approach, including specialists such as neurosurgeons, neurologists, pain management specialists, physical therapists, radiologists, and pain medicine physicians. Consulting with a healthcare team that includes these specialists is essential for the best outcome. The choice of the specific medical professional will depend on the individual's symptoms, the severity of the cyst, and the recommended treatment plan.

Managing pain from symptomatic Tarlov cysts involves several strategies: medications, physical therapy, heat or cold therapy, lifestyle modifications, pain management techniques, supportive devices, stress reduction, staying active, diet and nutrition, and alternative therapies. Work closely with your healthcare team to develop a personalized pain management plan that addresses your specific symptoms and needs.

No, Tarlov Cyst surgery rarely—if ever—causes Adhesive Arachnoiditis (AA).

According to Dr. Forrest Tennant, a leading expert in AA research, most Tarlov cysts inside the spinal canal are outpouchings of the arachnoid membrane, often linked to connective tissue disorders like Ehlers-Danlos Syndrome. However, AA itself develops from inflammation in the cauda equina nerve roots, which are not typically affected during Tarlov Cyst surgery.

Dr. Tennant emphasizes that cysts located outside the spinal canal cannot cause AA, and there is no need to avoid surgery out of fear of developing AA if the procedure is being recommended for severe pain or nerve compression.

“No one should avoid Tarlov cyst surgery simply due to a fear of AA.” — Dr. Forrest Tennant

As always, surgery decisions should be made in consultation with an experienced Tarlov cyst specialist, based on your unique symptoms and imaging.