16 Years of Searching for Answers:
A Tarlov Cyst Journey

I wanted to share my journey with Tarlov cysts because I know so many of you have struggled to

find answers and doctors who understand this condition.

My journey began in 2010. Before that, I was very active and loved riding horses. Then I

developed severe lower back and sacral pain that eventually made sitting and driving extremely

difficult. An MRI revealed multiple Tarlov cysts, and that began what would become 16 years of

searching for answers.

Over the years, I’ve seen more than 14 neurosurgeons and orthopedic doctors. Of those, only

about three acknowledged that my Tarlov cysts could possibly be symptomatic. The others

believed they were incidental findings and not responsible for my pain.

This has probably been one of the most confusing parts of my entire journey. After hearing so

many conflicting opinions, I began doubting myself. Were the cysts really causing my pain, or

was something else being overlooked? When so many doctors disagree, you eventually don’t

know what to believe.

In 2012, I underwent a hysterectomy that I later came to believe was completely unnecessary.

My pain wasn’t even coming from that area. Unfortunately, I developed pudendal neuralgia

afterward, and the experience was so traumatic that I developed PTSD and became frightened of

undergoing another surgery.

I’ve tried just about everything to find relief, including numerous S2, S3, and S4 epidural and

transforaminal injections, pudendal nerve blocks, piriformis injections, vaginal-area blocks, SI

joint injections, coccyx injections, and an L5-S1 injection that actually made my pain worse. I also

underwent pelvic floor physical therapy and other physical therapy treatments.

One early S2 injection gave me approximately eight months of relief, but subsequent treatments

weren’t nearly as successful.

Around 2015, I consulted with Dr. Feigenbaum in Dallas, Texas, about Tarlov cyst surgery.

Initially, we had a remote consultation, but my insurance company denied surgery, calling it

experimental and pointing out that I hadn’t seen him in person.

I then flew to Dallas for an in-person consultation, and we submitted another request. The

insurance company denied it again.

I fought for approximately three years trying to get surgery approved. During that time, my

health deteriorated, and my weight dropped to 99 pounds. I became so weak and sickly that I no

longer felt physically capable of undergoing surgery or recovering from it.

Eventually, I stopped pursuing surgery and spent years lying in bed.Somehow, I gradually began gaining weight again. In 2019, my pain management doctor

prescribed a buprenorphine pain patch, and I began exercising very slowly in a swimming pool.

Little by little, I regained some strength. Between the pool and the pain patch, I started feeling

better. I still had to sit on pillows, pace myself, and be extremely careful, but I was functioning

again.

I could pick up my grandchildren from school and spend afternoons with them. I remember

thinking, “Maybe I can live like this.”

That period lasted from 2019 until June 2024.

Then one day, I went to the pool and experienced excruciating pain. I tried again, and the same

thing happened. My pain continued getting worse until I could no longer tolerate the very activity

that had helped me regain my strength.

I also experienced an episode when I felt as though I was going to faint, and I still don’t know

what caused it.

Since then, my pain and limitations have continued to worsen. I have multiple Tarlov cysts

involving the sacral nerve roots on both sides, along with dural ectasia at L5-S1.

Today, even small activities such as walking, standing, bending, or doing light household chores

can cause tremendous pain. I also experience nerve-related symptoms in my feet and legs,

along with weakness and difficulty walking.

I spend much of my time lying down because activity increases my pain so dramatically.

After 16 years, I’m still searching for answers. I’m once again consulting with surgeons

experienced in treating Tarlov cysts, trying to determine whether surgery might be an option.

One of the hardest parts of this journey has been not knowing whom to believe. I’ve spent so

many years listening to conflicting medical opinions that I’ve questioned whether the cysts really

are responsible for my suffering.

I’ve lost so much of the active life I once enjoyed, and the thought of another surgery still

frightens me because of what I experienced with my hysterectomy.

I’m sharing my story because I know many of you understand the frustration, uncertainty, and

emotional toll of living with this condition.

I haven’t given up hope of getting some of my life back, and I hope that by sharing our

experiences, we can help one another along the way.