Life as a Case Study

My last post was about the insanity in my life and the new request for a c-spine MRI for Facet Injections. Update time.

Even though Tricare tried to derail the planned MRI by not letting me know ahead of time I needed an authorization because last year we switched from one major medical billing company to another, because government whatever, an awesome lady at the hospital billing department caught it, called me, called my referring doctors, and got the referral the day of the MRI.
Long story short, I was laying in an MRI machine Monday night listening to Blue Oyster Cult.

I got the disk before I left so my pain docs have the images tomorrow for the facet injections. If they happen.

I got the radiologist’s report today.

Because something popped up on my MRI. Because of course it did. I am the poster child for one-in-a-million. I figured a hip replacement at 34 years old was rare enough. Then I figured the inoperable brain tumor was rare enough.

But then we see this on the report…

IMG_20190130_143513

It would appear I have something called a perineural cyst on the left side (because of course it’s the left side. It’s ALWAYS the left side!!) of T1-T2. More commonly known as Tarlov Cysts and more commonly found in the sacral spine.

IMG_20190130_143531

So it would appear that I have some new tests and experiences ahead of me. There’s even a rare disease foundation for the Tarlov Cyst Disease research. As in 8-9% of the population: rare disease. I did what I always do and dove into research (and admittedly I have more reading to do, and I will probably reschedule my “routine” neurologist appointment since my next appointment isn’t until March 1) and it seems perineural cysts are under the “rare and genetic diseases” GARD and/or NORD national Organization for Rare Diseases . I’m nothing if not a research junkie.

I’m still processing. Clearly I have more to read and learn, and doctors to talk to.

BUT: they can’t tell me it’s “in my head”.

5 responses

  1. I forgot you had a hip replacement. Mine will wear out, darn it.
    You are a rarity.
    Sweet poster child.

    Liked by 1 person

  2. How are you my friend? Miss you.

    BTW, in answer to your query, “Because it can produce a few notes….”

    Liked by 1 person

    1. Miss you too sweets. It’s been busy. I very much need to write an update!

      Like

  3. I usually try to connect with other bloggers that share the wonderful Tarlov Cysts. I hope you like my blog name. I was one of those that chose surgery and would say as of today no regrets. It sounds sick to say welcome to the world of Tarlov’s but if you want to know what life is like after surgery check my blog out. I have been at this for over 4 years. if you want to talk privately I am on f-b. Having others to talk with sure makes life easier.

    Liked by 1 person

    1. Awesome! Thank you!

      Like

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