Wednesday, May 15, 2013

And so she rambles...

I do not like the giant magnet.
I came to this decision yesterday while laying in the tube with my head in a harness and that incessant knocking jarring my every thought.
The giant magnet reveals everything.
Every hidden secret in my body.
Like an untrustworthy friend, it spews my physical flaws into images that could be better off left in silence.
The giant magnet seems to taunt me as I'm there, trapped and motionless.
I try to pray..and succeed for a brief time, then the knocking wins my focus and I make up lyrics to the rhythm it makes.
Then from nowhere, "I wish I had a taco" .

That's pretty  much the way it went until the first two MRI's were complete.

Later, I pick up my MRI CD's and report.
I read the result with my limited neurological knowledge, knowing I really will have no answers until my doctors review these and the remainder of my spine is imaged.
So, what I know so far...with no real interpretation of results or impact on my neurological system is the following:


Small, thin fluid collection at the posterior skull base
C5 lesion consistent with small hemangioma
C2-C3-nothing significant
C3-C4- nothing significant
C4-C5-nothing significant
C5-C6-mildly desiccated disc with T2 signal loss and disc height, small broad based paracentral disc protrusion, mild central canal stenosis, ...and more blah blah blah that I don't I will spend days looking up--mostly radiological terms about signals-
C6-C7 bilateral perineural cysts along exiting nerve roots
C7-T-1 same as above
Additional note: perineural cysts along exiting nerve roots bilaterally at T1-T2 and on the left at T2-T3, lymph nodes small and not well categorized.


Craniotomy defect present...otherwise normal.

Now..I'm sure this is just my opinion..but, in my limited experience--there is still a very likely chance this will all be found "normal"...when we all know, "that ain't normal".

So, now I wait.
...and I research.
I sometimes wish I was one of those people that could just listen to the doctor and believe what he says...however...I know myself well enough to know that would never satisfy this need I have to be prepared, armed with knowledge before the doctor ever calls...

I did finally give in and call my neurosurgeon. I've been dealing mostly with my PCP because I just did not want to make a phone call to Dr. Kim. --After six days of dizziness I finally gave in and called....fully expecting to be told this is just part of the process of healing...

I guess I'm a creature of habit-because as I call Dr. Kim-the phone rings to his office
"ring-ring-ring" there anyone working in his office today"
I start with lyrics again:
"Where-the heck-is the staff"
Of course, as soon as I let the above referenced expletive come out of my mouth-the receptionist answers..."Mischner Neuroscience"...(great timing lady)

I'm then informed that it's clinic day so I may not be called back until tomorrow.
In my mind a say another profane word..and leave a message.
I say I'm almost 4 months post op and have had extreme dizziness for the past 6 days--and still have positional headaches.
She states back to me, "Okay-I'll have someone call you, I noted you have some pain and dizziness".

As I hang up, I think how sad it is that people don't listen, or pay attention. No wonder we have such trouble getting diagnosed and treated. Are we just not communicating properly? Can I not speak or can they not hear? As we as a group lack the ability to properly convey the hellish ordeal we have been dealing with...or do our complaints fall on deaf..or rather..otherwise occupied ears that can only hear what they want?

Do we speak Chairian?  Is it another language? Are we really from another world? Are we all from another planet (could the truth be that we actually are Sleestaks, I mean our heads are misshaped and we speak another language-you do the math)...or are we all just now starting to find others with our language since being dispersed at the Tower of Babel?

Whatever the reason...something has got to give. People need to be educated about our disorder.  Our physicians, nurses, families, neighbors, etc. This is bigger than just you and I . Every where I turn, someone has a new diagnosis...or a friend diagnosed after years of headaches who intentionally asked about Chiari and was told she does have it and its "Borderline" ..or a niece that is told she has "Chiari, but its mild and can't be causing her problems".  How is this so prevalent, yet so obscure?

I started this blog for awareness. As you know, I have a Facebook page by the same name. For sometime, even way before Chiari, I've wanted to be a published writer.  I love, love, love writing.  I've decided to start the process of turning this blog, my Chiari experience, into a book. I know this all has a purpose in my life and just maybe it is so I can write about it and help others. I have many details to sort out, so I am looking at writing as my full-time job for now. This time of indecision, testing and recovery is my time to get this going. I would appreciate any advice, comments, links, articles, etc that you feel would be helpful in this endeavor. I want to cover not only Chiari and my journey, but also, Ehlers-Danlos Syndrome, Arachnoid Cysts, Tethered Cord, Cervical myelopathy, fibromyalgia, chronic fatigue syndrome, inflammatory arthritis, empty sella syndrome..any and all disorders that affect us, and in many cases, lead us to misdiagnosis. 

Thank you for continuing to read.  We now have over 1500 site visits in 15 countries...keep sharing and spreading the word.

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