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Journey, Just My Thoughts

When Did My Tarlov Cysts Develop?


As I sit on my couch in my Cleopatra pose, I am reading some material about Tarlov Cysts. These items make me really question when my cysts developed and when they became active.  Some think we are born with these suckers; others think trauma.

If they don’t study infants to see how many are born with them, then we will never know.  If we don’t run to the hospital each time we bump our rear or slip on ice, we will never know.  Then, if radiologists don’t note them on every single MRI, we still won’t know.

To me, the when” does not truly matter; but for future generations it is important that each of us with Tarlov Cysts try to think through the “when” of the cysts becoming symptomatic (thus, Tarlov Cyst Disease).   I guess I consider it my responsibility to help with an account of my life.  So if researchers are reading or even just wondering, they will have a story of a patient and what was done to diagnose, treat and/or manage the disease.

But, to my theoretical mind, I think I may have had them all my life, but not born with them.  So if I take into account each trauma I’ve had, we need to start with the first that I know of.  Mind you, I don’t remember it, I was too young.  But as my parents were returning to West Virginia, maybe I was just a few months old (and before the time of seat belts), my father slid on ice and basically wrecked the car.  No child’s seats were around, so my mom had laid me in the front seat between them.  The seats were like couches back then, so there was room.  My mother said she thought I was dead, as I would not respond.  Justifiably, that could be considered my first trauma.

I know I have fallen on river banks, ice, even fallen flying out of a swing on the school yard.  I have landed wrong coming off slides.  All parts of being a then normal child.  Later, in college, I fell several times while hiking to classes in knee-deep snow or on ice.  We were not babied back then.  So what if you needed to make your own path to the building, it was expected, you were wanting to be an adult, so get with the agenda.  Then there were times when I was pregnant.  My babies each rested on my spine and used it for exercising.  And of course I have been in car accidents, before the law required seat belts.

So, since I am no different from 70% of the population, I do have to think back to when I noticed that my tailbone didn’t like me.  The first I can remember was in gym class in 7th grade.  We were doing sit ups, where you took turns holding down each others feet, with knees bent.  I always partnered with the same girl.  She knew that the sit ups caused pain, they made me cry, but I never told anyone.  She would skip a few as we counted.  That discomfort continued for the rest of my life.  It was also about that time in my life that I was kicked in my rear.  I could ride a bike back then, but it was uncomfortable to sit on the seat.

Now fast forward to after my first child was born.  I needed to get back into shape, so I bought a stationary bike. Each time I sat on that torture device, my tailbone was the only thing that felt the burn.  But, I kept at it for years and tried several different seat covers to no avail.  Yard sale!  About 5 years later, I started noticing that sitting on hard surfaces would make me feel stiff when trying to rise, much less it was a shorter expanse of time before not being able to sit still.  A few years later, the seats of any firm chair or pew would make me uncomfortable on my tailbone, add the stiffness, and now add numbness.  Fast forward to just the last 5 years and no matter what surface I properly sat on, caused major discomfort.

Now I have to talk about the past two to three years.  As in my journey pages (  My Journey ), I was seeking help in 2014.  A year or so before, I had slipped on a single step stool while messing in my flower bed, and it flipped.  You guessed it; I landed on the foot of the stool in that most tender spot of the tailbone.  Also, I slipped on my stairs and landed on the handrail, yep, on the tailbone.  I did this, not just once, but several times.

By revisiting the journey of my life with more detailed reflection, I am taking a different view.  I am now leaning toward early age trauma.  Pair that with continuous trauma over 40 or so years.  It truly sounds like a recipe for Tarlov Cysts development at an early age, and them becoming symptomatic over time.  The ‘becoming symptomatic’ then adds the label of  “Disease”.




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