From “Incidental” to Answers:
A Journey Through Tarlov Cyst Disease

Symptom onset/timeline:

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• 4/2023 – INJURY: First injury to my low back. I twisted to the side to “crack” my back & experienced severe lumbar pain and discomfort/pain with prolonged sitting after this.

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• 5/2023 – First lumbar MRI, the results showed L4-L5 disc herniation & annular tear, L5-S1disc herniation, and a 1.5 cm Tarlov cyst at S2 “which is a developmental variant and typically of no clinical significance”.

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• 5/17/2023 – Ortho evaluation: Lumbar pain with radiating left leg pain; referred to pain management & physical therapy.

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• 6/19/2023 – Pain management performed a left L4/L5 transforaminal epidural steroid injection (TFESI).

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• 6/28/2023 – Ortho Follow-up: Given a Toradol injection

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• 7/27/2023 – Ortho/Neuro Follow-up: Improvements with TFESI & physical therapy.

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• June-Sep 2023 – Physical therapy continued.

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• 3/7/2024 – Ortho Follow-up: Diagnosed with bilateral SI joint syndrome due to worsening pain with sitting, referred to physical therapy again but unable to go due to lack of insurance coverage.

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• 4/2024 – Worsening lumbar, SI, and hip pain – given oral steroids and meloxicam.

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• 5/2024 – Second MRI, results showed multilevel lumbar spondylosis, L3-L4 disc bulge, L4-L5 disc herniation contacting left transiting L5 nerve root, mild spinal canal stenosis, L5-S1 disc bulge, minimal spinal canal narrowing, 1.8 cm Tarlov cyst at right S2

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• 10/28/2024 – INJURY: Second injury to my low back. I lifted my 35-40 lb elderly immobile dog and felt something pop and had immediate radiating pain.

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• 11/11/2024 – Primary care visit: 5/10 pain, severe pain with sitting, prescribed 100 mg gabapentin 3x day.

 

• 11/12/2024 – Pain management Follow-up: Discussed gabapentin concerns, dosing up slowly, and possible future TFESI procedure. At this point sitting was so painful I had to discontinue driving completely.

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• 11/18/2024 – Neurosurgeon evaluation: He advised to continue with TFESI procedure, increased gabapentin dose to 300 mg at night and 100 mg in the morning.

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• 12/3/2024 – Pain management performed a left L4/L5 transforaminal epidural steroid injection (TFESI); zero improvement in pain.

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• 12/17/2024 – Ortho Follow-up: Ordered new MRI (unable to complete before ER visit)

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• 1/6/2025 – Woke up in 9/10 pain in lumbosacral area radiating down left leg. Unable to walk, stand, sit. Tried to wait it out at home.

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• 1/7/2025 – Went to urgent care and was referred to ER due to some numbness into buttocks/saddle; CT scan done but no MRI. I was treated with steroids, muscle relaxers, & fentanyl – brought pain to 4/10 before discharged home.

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• 1/9/2025 – Pain management follow-up: Pain at 7/10. Prescribed percocet and STAT MRI ordered

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• 1/9/2025 – STAT MRI (3rd); L3-L4 mild disc herniation, L4-L5 9 mm disc herniation contacting and displacing the left L5 nerve root with mild to moderate thecal sac effacement, L5-S1 7 mm disc herniation contacting and displacing left S1 nerve root,“Tarlov cysts are present at sacral levels. One of the largest on the right side measures 1.9 cm x 1.5 cm” likely compressing right S2 nerve root.

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• 1/14/2025 – Neurosurgeon Follow-up: I failed multiple conservative measures, discussed possibility of proceeding with left L4-L5 and L5-S1 microdiscectomy.

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• 1/31/2025 – SURGERY: Left L4-L5 and L5-S1 microdiscectomy

 

• 3/6/2025 – Neurosurgeon Post-op Follow-up: I had continued left leg numbness, hip and SI joint pain, cannot sit more than 10-15 mins; He recommended home health physical therapy.

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• 3/11/2025 – Pain management Follow-up: I had continued lumbosacral pain, inability to sit, advised to allow more time to heal from surgery.

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• 3/19/2025 – Started home health physical therapy.

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• 5/6/2025 – Neurosurgeon Post-op Follow-up – Improvement in left leg pain/numbness, but still having lumbosacral pain and cannot sit at length. No improvement with PT. Was told I “had too much else going on” and I just needed to see pain management now. When I asked about the Tarlov cysts as a source of my pain, I was dismissed. My request for a follow-up MRI was refused.

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• 5/8/2025 – Discharged from home health PT. No improvement, pain was actually increasing.

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• 5/12/2025 – Pain management Follow-up: We discussed continued intractable pain and inability to sit and/or drive for 7 months, prescribed medical marijuana card from state for THC treatment.

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• 5/18/2025 – Patient portal message to neurosurgeon: “My 2023 MRI showed a 1.5 cm Tarlov cyst at S2. I was told it had no clinical significance. I just found out from the EDS Society that Tarlov cyst syndrome may be associated with EDS. And then I read from the American Association of Neurological Surgeons that Tarlov cyst syndrome can cause difficulty sitting for prolonged periods. Since I still cannot tolerate sitting for more than 10-15 minute increments while medicated, is it possible that my cyst is causing the inability to sit?” Surgeon’s response: “Tarlov cysts typically do not cause symptoms and I do not recommend surgical intervention for them as this can results in chronic CSF leak given the cyst is contiguous with the spinal sac. Many patients have Tarlov cyst and is usually just an incidental finding.”

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• 7/9/2025 – 4th MRI (ordered by pain management): 2.1 cm x 1.8 cm Tarlov cyst right S2, right S2 nerve root is indented, 1 or 2 subcentimeter cysts are suggested adjacent to left S2 – “correlate clinically with possible right S2 radiculopathy”; 12 mm disc herniation at L4-L5, 6 mm disc herniation with annular tear at L5-S1

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• 7/31/2025 – Pain management Follow-up: I had worsening lumbosacral pain and pain radiating down left leg, MRI shows L4/L5 disc herniation is worse than prior to 1/31 surgery (12 mm vs 9 mm) – possibly due to PT? Discussed L5/S1 ILESI procedure.

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• 8/26/2025 – Pain management procedure – L5/S1 interlaminar epidural steroid injection (ILESI); no improvements in pain.

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• 8/28/2025 – In person consultation with Dr. Feigenbaum – Dallas, TX; recommended surgery with Dr. Hennessy assisting with a discectomy revision

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• 9/15/2025 – Local neurosurgeon consult for 2nd opinion – she recommended to keep the plan with dual surgery with Dr. Feigenbaum and Dr. Hennessy

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• 12/17/2025 – SURGERY: Feigenbaum = sacral laminectomy, treatment of sacral meningeal cysts, dorsal sacral reconstruction with resorbable plating; Hennessy = L4/L5 discectomy revision (Note: At time of surgery I was taking 1800 mg gabapentin daily)

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• 12/20/2025 – Discharged from hospital. Returned to ER after near syncope event related to POTS.

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• 12/22/2025 – Post-op Follow-up with Dr. Feigenbaum, cleared to return home.

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• 12/23/2025 – Marshall, TX ER Visit: Second near syncope event + severe chest pain. R/O PE. Syncope appears to be side effect of Robaxin - discontinued. • 12/24/2025 – Arrived home in GA after 2.5 days of driving. Was able to sit in the front seat, stopping every 1-1.5 hours to walk around.

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• 12/31/2025 – Telehealth Post-op Follow-up with Dr. Hennessy & Office visit Follow-up with primary care for pain medication management (was having increased pain due to MCAS reaction to opioids)

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• 1/8/2026 – Post-op Follow-up with Pain Management: Residual nerve pain with intermittent “zaps” in sacrum, 900 mg gabapentin daily for next 3 months before taper. Urgent Care Visit: Removal of nylon stitches.

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• 4/13/2026 – Pain management Follow-up: Improvement in pain and range of motion. Morning stiffness & achiness persists. Right SI joint pain with burning sensation and intermittent numbness in left big toe. Nerve “zaps” in sacrum decreased. Will begin gabapentin taper by 100 mg increments as tolerated and initiated low dose naltrexone treatment starting with a 1 mg taper to a final dose of 4.5 mg.

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• 7/20/2026 – Pain management Follow-up: Increased right side sacroiliac pain with difficulty ambulating, numbness in buttocks, and intermittent shooting pain in sacrum. Recent reduction in gabapentin from 700 mg to 600 mg correlated with increased symptoms. Will start meloxicam 15 mg daily during pain flare.

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• 10/9/2026 – Urogynecologist Evaluation: Pelvic floor dysfunction with uterine prolapse and rectocele. Contributing factors include previous compression/damage to sacral nerves by Tarlov Cysts.

 

• 10/20/2026 – Pain management Follow-up: Sacroiliac region pain has improved, no burning and no longer painful to touch. Overall pain continues to improve, one major “electric shock-like” episode earlier this month when sitting which resolved after 60 seconds or less. Gabapentin 500 mg daily has been well tolerated and will taper down to 400 mg.

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• 10/28/2026 – Pelvic Physical Therapy Evaluation: Started pelvic PT exercises to improve pelvic floor dysfunction & prolapses. Reflexes diminished indicating nerve damage to S2, S3 or S4