Health/ Tarlov Cyst Disease

C-Spine Dysfunction

November 7, 2016
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To say the past month or so has been a whirlwind is kind of an understatement.  I’ve had some very high highs (some of the BEST all year), some low lows (some of my WORST all year), experienced three deaths (a very good friends father, my sister in laws mother, and my own beautiful and EXTRAordinary aunt), ruled out one of the most serious autoimmune diseases, and also happened to have yet another new tentative medical diagnoses… one that came totally out of the dark thats still a little bit iffy.

With my ongoing autoimmune testing and ruling out phase, a new MRI was scheduled a couple of weeks ago.  This one would be for my C-Spine to officially rule out multiple sclerosis and possibly see what could be causing all of the rapidly progressing upper body issues I have been having (extreme pain in my neck, radiating pain in my shoulders, headaches in the base of my head, constant tingling/pins & needles in my hands, and many moments of COMPLETE numbness in my hands and fingers).  I had gotten very used to not fully feeling my legs, feet, and other nerve related issues, but wasn’t exactly prepared for my upper body to follow along in all that fun also.  Since last November, I was having occasional & intermittent weird sensations in my hands and fingers, but nothing like its progressed to the last couple of months.

A tentative answer has arrived…

With my daughter in tow (daddy on his way to meet us after a work training), we arrived at Kaiser for my new MRI, checked in, was told they were running a bit behind (shocking), and they would hopefully call me in soon.  After 1 1/2 hours or so PAST my appointment time, it was finally my turn but not before a little lecture on how I should NOT have brought my daughter and dirty looks from the radiology techs who had to leave the scan area to get a chair for my daughter to sit in while we waited for daddy to come (literally in 5 minutes).  There was a mention of contrast dye for this particular MRI but when I told them I was allergic, I got more attitude about how they wish they had known (uh, its right there in my chart Mr.), and then asked “So are you refusing contrast dye for this study?”  Uh, yeah.  Do you see the pictures of what happens when its used?  Nope, no contrast dye for me thanks.

Corina Nielsen- Live Fit

After 20 minutes or so in the tube I was done and beyond ready to get away from the hospital.  However, as I was grabbing my purse and heading out my MRI imaging was up on the tech’s computer.  I quickly went over to see if I saw any white masses (MS lesions) and asked “Oh is this my scan?”  He quickly sat down and said “Yes, want to see?”  What a stupid question… YES!  Then he proceeded to explain a few things and asked “So do you see this here?  These little indentions?  Those are bulged disks!  The radiologist will rate their severity, but there ya go.”

I was almost in tears because with this new “diagnoses”, ALL of the upper body symptoms I was experiencing made total sense.  I wasn’t going crazy.  I wasn’t imagining any of my upper body pain and issues.  This was HUGE for me.  I finally felt like I had something concrete to work with.  When you are in limbo with receiving a medical diagnoses, its so much harder to know what proactive path to choose.  You can’t attack something without knowing what you are dealing with right?  Now I knew… or so I thought I did thanks to this particular radiology tech.

So 3-4 bulged disks huh?  Yeah it sucked, but its NOT multiple sclerosis OR more Tarlov cysts.  To me, this was actually GREAT news (my husband was less than thrilled because 4 bulged disks are still 4 bulged disks). However, the way I saw it was people deal with bulged disks all of the time and they can somewhat be managed and even improved.  This was a diagnoses I could handle and again, I was more relieved knowing that I wasn’t going crazy!

Yet after talking with my doctor about the MRI, I was devastated.  I hadn’t seen the report yet, but she told me that it said I had NO C-Spine abnormalities that could explain my upper body symptoms.  I couldn’t help but break down and cry.  I cried like I had’t in forever.  So I really am going crazy AND I’m back to square one trying to figure something out.  I was totally and utterly defeated… and it takes a LOT for me to ever feel this way about anything.  I actually don’t recall more than a few times in my life where I felt quite like this.  No idea why it hit me so hard, but it indeed did.

Once I had my long and horribly ugly cry I wiped my face, put on my big girl underpants, relit my fire, and decided I needed to look at the scan and report myself.  I called medical files and requested my copy.  Fortunately I didn’t have to wait more than a day!  Here is one of the many many images taken.  See the little indentions along the spinal cord?  I’m *think* this gives a pretty good view.

C-Spine MRI

I looked at my MRI imaging, read the report, and while there certainly was NO mention of bulged disks there were MANY mentions of abnormalities.  It was all medical terms and jargon, but there was no denying that nearly every level on my C-Spine had issues.  Now I just had to narrow it down and break down the lingo…

“C4-5: Right facet hypertrophy.  Central disk osteophyte complex.

C5-6: Motion limitation at this level.  Disk osseous complex partially effacing the ventral CSF space.

C6-7: Small central disk artifact complex.  Mild ligament flavum thickening.”

And this was perhaps my favorite part of the whole report AFTER researching the medical terms…

“No explanation for patient’s symptoms.”

Ok friends, lets break this down a bit…

  1. Right facet hypertrophy– The joint can enlarge to the point where it puts pressure on the adjacent nerves in the spine, which in turn can cause pain to radiate along the path of the nerve
  2. Central disk osteophyte complex– …as osteophytes tend to grow and start rubbing on the vertebrae or impinge on a nerve root that is when an individual starts to experience pain and decreased range of motion of the affected spine. There can also be radiation of pain to the extremities. Headaches that seem to be centered in the back of the head are common. In some instances, although rare, Disc Osteophyte Complex has also caused paralysis.
  3. Motion limitation- pretty self explanatory
  4. Disk osseous complex partially effacing the ventral CSF space- same as #2 I think except at C5-6 its closer to the CSF (cerebrospinal fluid).
  5. Mild ligament flavum thickening– A thickened ligament can cause spinal stenosis (a narrowing of nerve passageways in the spinal column), which may lead some patients to experience a number of uncomfortable symptoms, especially if a spinal nerve becomes impinged. The symptoms of spinal stenosis include:
    • Pain (may be felt in the neck or back and radiate to other parts of the body as well, including the arms, hands, buttocks, legs and feet)
    • Numbness
    • Tingling
    • Muscle weakness

Yet the report reads “No explanation for patient’s symptoms.”  What the actual hell are you even talking about???  FOUR entire levels of findings and each and every single one of them DO in fact explain ALL of my upper body symptoms.  I still have yet to understand how on earth the report and my doctors could say I’m back at square one!

Although I was shocked and of course concerned about the actual findings at least I know for sure that I am not imagining everything I’m experiencing.  I immediately put an email into my doctor AND scheduled an appointment.  I see her tomorrow and HOPEFULLY she will hear me out, do some research on her own, and truly listen to me.  If not, I have my MRI imaging disk in hand and ready to seek out an out of network consult with another neurosurgeon to see what I’m really dealing with in the present and the future!

So yeah, basically my entire spine is all shot to shit.  C-spine conditions listed here, T-Spine arthritis/degenerative disk disease, and three S-Spine Tarlov Cysts.  All affecting my nerves which completely and utterly explains why my entire body has head to toe has 24 hour tingles, periods of complete numbness, and pain.  I find it ironic that for 37 years of my life I never even had as much as a back ache.  Now at 38 my back is slowly but surely falling apart :(.  Muscle pain, joint pain, bone pain don’t even come close to nerve pain and issues… totally different ball game!  It’s FULL body action going on 24 hours a day, every single day.

We are crossing our fingers that at tomorrow’s appointment my primary doctor takes some proactive steps and can guide me through the next steps.  I’m ready to come out swinging doc… I hope you are prepared 🙂

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1 Comment

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    November 11, 2016 at 8:46 pm

    Thanks for posting this and explaining how you are feeling.

    I am going through some similar things with my c-spine, including several bulging discs and a herniated disc, along with some stenosis, calcification, and a mildly deformed and rotated C-1. The funny thing-my neck/head symptoms also seem to have no explanation!

    Keep on trucking and trying!

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