Becky Chandler-Berry’s Story

7 min read

My Tarlov Cyst Journey 

Becky Chandler-Berry, MD  

My tailbone pain began in 2019 and left me barely able to sit on the medical stool in my office while I saw patients. The ache gradually grew bad enough that I had to carry a Cushy  Tushy or donut cushion everywhere. At first, I blamed the ache on the hardness of the stool,  the way I sat on it, and the 90-degree angle of my tailbone area. The bone at the curve is a  pentagon rather than a rectangle—an anomaly I’ve likely had since birth.  

My pain worsened from 2019-2020. This time, I blamed it on the falls I’d had rollerblading. I  tried non-steroidal anti-inflammatory medications, Tylenol, muscle relaxers, lidocaine  patches, and a trigger point steroid injection in the muscles around the coccyx. Nothing  alleviated it, and I didn’t want to resort to narcotics for relief. 

It got to the point where I couldn’t tolerate the pain (7-8/10 intensity). For reference, I have a  very high pain tolerance. I once broke my finger to the point it dangled, and I’ve had  multiple colonoscopies without anesthesia (which I would rank as a 3-4/10 intensity).  

I sought a pain management specialist who concluded my 2.4 cm S1-S2 Tarlov Cyst to  likely be the cause of my symptoms. The T1 and T2 weighted MRI images below were taken  at di9erent times. The first was during a diverticulitis flare, which made me question if the  Tarlov Cyst had something to do with my recurrent constipation (which could be a likely  cause since the Tarlov Cyst nerve compression a9ected the S3-S4 area).  

The T2 images below show the Tarlov Cyst as a bright highlighted area filled with CSF fluid.

The T1 image below shows the cyst darker in color. 

A ganglion impar block with lidocaine and steroids relieved my discomfort for about a year.  But then the pain returned, quickly shooting from a 4-5/10 to an 8-9/10. The stabbing,  burning sensation of sitting on rocks made it so I couldn’t sit for any significant length of  time.  

In 2020, I began having mixed stress urinary incontinence, intermittent nighttime calf/foot  cramps, pain in the sacrum radiating to the buttocks, and recurrent coccyx pain. I returned  for another ganglion impar block and a caudal steroid injection at the level of the S2 cyst.  

Starting in 2021, I had recurrent caudal epidural steroid injections that helped my  symptoms for 6-9 months. However, each injection provided less relief than the last. Next  up was a selective nerve root block. That only minimally relieved my symptoms. Done with  a catheter inserted up the canal to the level of the Tarlov cyst, the procedure hurt more  than the injection itself. 

I elected to have another selective nerve root block in the Fall of 2024. It did relieve my  symptoms—for about two hours. At that point, surgery on the Tarlov Cyst seemed to be my  best option.

In December, I developed bilateral sciatica and heel pain. When I performed a Valsalva  maneuver, my sciatica symptoms got worse, supporting that they were related to the  pressure within that Tarlov Cyst. 

Frustrated but not ready to give up, I researched various Tarlov Cyst excision techniques (and their success rates) performed by multiple surgeons and reviewed papers from all  around the world, including the Japanese Orthopedic Association. Ready to expect an 80%  success, I reached out to my insurance rep, who gave me the names of in-network  neurosurgeons within my city. And, of course, none of them performed the surgery I  needed, except for Dr Feigenbaum who did not take my insurance. After receiving no  response from in-network surgeons farther away, I discovered Dr. Choll Kim.  

I watched all of Dr. Kim’s Tarlov Cyst excision procedure videos on YouTube. Amazed with  his accolades, transparency, and outcomes, I made an appointment for a video visit.  During that appointment, he explained everything confidently and in detail, thereby  reassuring me that I found the right doctor to perform my procedure. As a person of deep  faith, I also appreciated that in every video I’d watched, he’d prayed for a successful  surgery and a speedy recovery.  

Dr. Kim’s staff was amazing, quickly completing the paperwork and making sure I had  everything in place for my travels to San Diego. I was grateful I didn’t have to wait long. My  sciatica and heel pain had worsened significantly as had my ability to sleep, despite sleep  aids and non-narcotic pain medications.  

Finally, my pre-op appointment at the UCSD East Campus arrived. Luis escorted my  husband and I to Michelle, my RN, who thoroughly walked through my medical history and  made sure I understood everything that would happen the following day. Dr Kim took the  time to describe the procedure and what to expect after. 

On the day of the procedure, Michelle took great care of me as did the anesthesiologist, the  neurophysiologist, and of course Dr. Kim as I was whisked away to the OR.  

I woke up to a miracle in the post-op recovery unit. I had no back, leg, or foot pain. None.  Anna, my post-op RN, made sure I was comfortable and that I was able to pick up my post op meds from the pharmacy.  

That first night, I took a Percocet and a Gabapentin. The next two days, I only needed one  Percocet and a couple Aleve each day. I walked 2-4 thousand steps. My pain intensity  stayed at a 2-3/10 and occurred only in my lower back post-surgical area. 

A few days later, I returned to work performing televisits on half days. Now, a few months  out from the procedure, I have no further lower back pain, sciatica symptoms or tailbone  pain and only minor buttock/gluteal pain. I’m able to bend, stand, walk, play pickle ball, bike  and sit for > 7-8 hours. I’m beyond thankful for the excellent care I received from Dr Kim and  his staff, and look forward to reaping the benefits for years to come.  

My hope is to share my journey with others suffering from similar pain and to help doctors  realize that Tarlov Cysts can be symptomatic. The symptoms can be relieved by performing the Tarlov Cyst excision and imbrication procedure, and this life-altering surgery should be  covered by insurance. If it were available to those that need it, they may get better control  of their pain and alleviate further nerve damage.