In this post I share my case of Tarlov Cysts recovery without surgery and how in a window of 2 years I went from feeling severe back pain and being seriously limited in my daily life activities to being able to stand, seat and lay down without pain.
DIAGNOSIS AND EARLY DAYS
In September 2020 I started having unbearable back pain in my sacrum area (right side) that irradiated to my right leg and foot. I couldn’t bear standing still or seating for even 5 minutes. Pain was extremely intense 24/7 and that continued for weeks and months. An IRM scan revealed the presence of several Tarlov Cysts in my sacrum area – biggest ones were 2.8cm and located in S1 and L5. I saw 5 neurosurgeons, all of them advised against surgery as I wasn’t losing strength on my leg (as confirmed by electromyogram) and they told me that risk of complications with TC surgery were high as there’s not a consistently successful procedure to eliminate the cysts – I decided not to have surgery and started following conservative treatments (medication, back strengthening, acupuncture, infiltrations, …see full overview in Main Pain Toolkit).
PROGRESS OVER THE PAST 2 YEARS
First 6 months after being diagnosed were beyond tough – I was in a lot of pain, not able to seat nor stand, not able to take care of my kids (who were 6/4/1 y.o. at that time), not able to work, not able to sleep at night, no social life, not able to travel anywhere by car…I felt like I was living in a 100 y.o. body when I was only 36…and that ‘my life’ as I knew it was over. I was in pain 24/7; and the pain would get worse when ‘seating’ and ‘standing still’. Pain would also peak ‘in the afternoon/night’. I was desperate. However, as months went by, I started feeling small improvements,; the most noticeable one was that I started being able to seat/stand still first for short periods of time and then for a bit longer. After 7 months, I was able to seat/stand for about 2h in a row and I went back to work at 20% with the aid of a standing desk and a special office chair. With time, I continued improving and I could increase work % progressively and do things which were a no-go at first (like being inside a car) – Today, 2 years later, I can work full time, i hike on weekends, i can go out for dinner with my friends, i pick up my kids in school/kindergarten and I can travel with my family on weekends/holidays by car – ALL of that was totally impossible not only 2 years ago when I was diagnosed but also 1 year ago (being inside a car was still unbearable last summer!). Please note, I´m not fully recovered – I have paresthesia in my right leg/foot, I avoid driving (my leg hurts too much if I do) and I need to pace myself and follow several routines to maintain the quality of life that I have today and stop pain from escalating including: ALWAYS using ‘Kabooti Ergonomic Cushion’ when seating, do daily back-strengthening exercises, use a standing desk when working, stretch my back every 30´, walk 1h every day, among others…but, for the most part of the day, I can seat, lay down and stand without pain. And, as you can see, my life is almost ´normal´.
IMPORTANT – Progress has never been linear. That was extremely frustrating the first months as every time I would have few ‘good days’ I would believe that ‘I was finally getting better’ and then I would have an awful week which would discourage me and make me think that ‘I would never recover’…but over time I could observe a positive trend, and that was extremely encouraging. Keeping a diary helped a lot.
WHAT DROVE MY POSITIVE PROGRESS?
Well…this I can’t tell for sure…maybe I improved driven by everything I did or maybe I was just lucky…But I’m describing the many steps I took in my post ‘My pain toolkit‘ hoping they can be of use to you.