“Oh no, not you again f’ing up my life.
It was bad the first time, I can’t stand it twice” The song “Oh no,
not you again” by The Rolling Stones keeps popping into my head. It was about this time of year two years ago
that I learned that I had Chiari and that the best bet for a better life was
decompression surgery. So I signed up
for brain surgery and looked forward to at least a few pain free days. Um yeah about that…there hasn’t been a single
pain free day since the surgery. I did
get some relief from the intensity of the pain, and I got relief from the dizzy
spells and I don’t walk into walls as much as I used too. But over the last few months the pain and
exhaustion has come roaring back, my left side has gone numb again and I have
started to lose my words again.
Sometimes I use the wrong word in a sentence, which is more embarrassing
than losing a word. I thought for sure
that my brain re-herniated and that I was looking at another surgery, that’s
when that Rolling Stones song became my daily theme song.
I decided to take charge of my
health and find out what the heck was going on.
Well, it wasn’t really me
taking charge of my health, my dear sweet wife shall we say “prodded” me to get
off my butt and do something about it. My
first trip was to my awesome neurosurgeon Dr. German. He did another work-up on me and decided I
better get another MRI. Oh joy, you all know how much I enjoy MRI's. I told him
that I needed some form of mild sedation if I was going to survive “The Tube of
Doom”. This time they gave me some
Valium. It worked great, not a single
panic attack!!! Plus for a short while I didn’t care that my head was killing
me. One day after the MRI Dr. German
called me to tell me that everything looks good in my brain and my neck, there
is still a small leak but nothing that concerns him. Next stop…a neurologist.
My neurologist diagnosed my
Chiari and is one of the premier practitioners in the field of headache causes
and relief, hell he knows all about Chiari.
He also has ZERO bedside manner, he’s such a prick that I spent most of
the appointment keeping my temper in check and making sure I don’t punch
him. I can hear you all now saying “why
does he put up with him?” It’s simple
I’m there to come up with a pain management plan, not be his best buddy. I want the best doctors, not the nicest.
The entire first half of the
appointment left me feeling hopeless. He
would say things like: “How am I supposed
to treat you, you had the surgery and your MRI is fine, except for the small leak
(better known as a Pseudomeningocele).”…”Why did you
come to me instead of your GP”…”I don’t think there’s anything I can do for
you”.
I drifted between rage and despair actually fighting off tears. I thought for sure that he was just going to
tell me to suck it up and live with it.
Then he suddenly decided he would do a neuro work-up on me, once he was
done he left the room for a few minutes.
It turns out he was re-reading my MRI results. When he came back in he was like a different
person, he remembered that I have two children and asked how old they were and
engaged in other small talk. His initial
theory is that perhaps the pressure in my brain is too high, and of course the
best way to determine that is with a lumbar puncture (Spinal Tap). But before he does that he decided to try
giving me the medication that they would give me if my pressure is too high,
it’s a diuretic called
Acetazolamide. I’ve been on it a little
over one week and it hasn’t helped, but he did say it could take a few weeks so
I’m still hopeful.
I have another appointment with the neurologist next week so
I’m sure I’ll have another story or two to share.
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