Monday, August 27, 2012

From 60 to 16

It has now been one week since my second lumbar puncture (spinal tap). I had waited over three years for the event, and was looking forward to the spine-poking test with hopeful anticipation. My first spinal tap on June 10, 2009, had been one of the most fantastic medical procedures I had ever experienced in my life. When I laid down upon the table and felt the needle pierce my spinal cord the relief I felt was nothing less than euphoric. In the year (or more) preceding that tap I had a pressure building in my neck, my head and my eyes that was unyielding. I felt as though I was losing my mind. I felt 24 hour pain, pressure and confusion while the world around me saw a healthy face. I knew something was wrong; I knew my body was screaming at me for attention, but no one else could hear those cries. I was alone, I was frightened and I thought I was losing my grip on the world I lived in.


Thankfully, that first spinal tap found the cerebral spinal fluid (CSF) that had been squeezing me from the inside. The tap took away a bunch of the fluid (four vials!) and gave a name to the culprit inside stealing my sanity: Idiopathic Intracranial Hypertension (IIH), or Pseudotumor Cerebri (PTC - so called because the symptoms are the same as those with a brain tumor even though there is none present, psuedotumor = "fake" tumor). The diagnosis was reached because, on that spinal tap, I had an opening pressure of 60 with no sign of infection. The pressure was abnormally high for inexplicable (that's what "idiopathic" means) reasons.

That was then...


Last week I didn't know what to expect. After two weeks of tapering off of the Diamox (the drug I had been on to control the CSF) I did not immediately feel as though my brain had been thrust back into the crushing grasp of an overflow of cerebral spinal fluid the likes that I had become accustomed to last decade. I still felt headaches. Dizziness continued to be a major factor, but I could see the world and I could see it without the distractions of floating auras, flashing lights and dented faces (that actually happened right before my diagnosis - very freaky!). What did it mean? According to my doctors, only a good old spinal tap could tell us the answer.

For some reason I was in great spirits the day of the tap. To be honest with you, I credit you. Every single one of you who read the post leading up to the test, every single person who prayed for me, thought of me or just wished me well - something lifted me up that day. I was uncontrollably optimistic. I was told
  • the test would be done without a fluoroscope (no fancy x-ray to make sure the doctor hit the right spot), 
  • that I would have to be stabbed sitting up then keep the needle in while I do some wacky-balancing act in fetal position while tiling my body over to lay in that position for the procedure,
  • that the only people in the world who don't have a bad experience with LP are those with high pressure, and
  • that I would have to help the doctor hit the right spot by guiding her when or if she hit a sciatic nerve.
Then I was asked if I would like any drugs to keep me calm. I smiled. I laughed. I said, "No, I don't think so. What for?" Who the hell was I? I went into the room with the doctor and the attending nurse laughing and joking about my icy cold hands. We discussed how silly I was for still keeping my old license which screwed up my medical records everywhere. I politely told the doctor I felt weirdness in my right leg. I heard the panic in her voice as she moved the needle, but could not fathom what was so worrisome... just move the needle! I laid on my side, half hanging off the bed like some weird monkey feeling just fine and thought, "This is almost done," when I heard the doctor say, "Sixteen."

My heart skipped a beat. A number. Could it be my opening pressure?! A sixteen is a NORMAL opening pressure. I could feel no pain. I did everything to stave off the tears of joy. I didn't want to jump to any conclusions, but I couldn't help myself. I don't know what else we did in between - what we talked about or joked about through the rest of the procedure, not until I asked the doctor outright, when the needle was out and I was lying on my back, if my assumption was correct. It was.

I have not yet seen any of my specialists. My first appointment is this week and I'm trying to bump up my next one - with the guy who planned this whole experiment - which is currently in late September. I don't want to jump the gun here, but 16 is very good news to me. Anything under 20 is considered "normal." Normal is pretty awesome.

I know I'm not out of the woods yet. I'm still getting headaches and the dizziness is still crashing every little party I throw in my brain, but they both could be from something else. The fact is, I don't think I need the Diamox to hold back my CSF anymore. I fear typing it, but I've been toying with that very sexy "R" word again (remission!). In August 2011 I found out my Crohn's disease was in remission, why not add IIH to the list in August of 2012?! Crossing my fingers that my pseudo-medical degree, which I achieved through years of Internet study and doctor/specialists inquisitions, has taught me enough to give this hopeful claim some merit!

Since the Tap 
In the meantime I've been reading and writing. I've been thinking and dreaming. I've been wondering what comes next? I know it's up to me and I know not to push myself too far too fast, but part of me is holding out hopes that maybe just maybe the headaches and the dizziness is after-shock from three years of Diamox... Part of me is daring to dream that I might just get to taste life again as a healthy human being baring only two scars - the one only the highly trained eye can see when examining my left eyelid, and the other only visible to me in the form of my own vision: fractured, broken and inconsistently depth-deprived.

If it is a dream, I beg you, just let me sleep a little more...

And Finally

One last thing. To all of you who kept me in your prayers and sent me good wishes I can never ever thank you enough, but please know that my heart sings your praises with every single beat.

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