Well folks...this is it. The start of the end of these seizures. No
more tumor. No more invalid license (eventually). No more meds. The final
countdown to the slice-and-dice has begun.
First, a HUGE thank you to everyone that has reached out to me or my
family about this upcoming operation. January 26, the date of my first
procedure, is fast approaching and all of the support and love is amazing. This
blog is for all those who have asked for some details, and I’ll be keeping you
updated as the appointments and VCU visits keep coming!
For those who may not know, I am currently being treated for “Localization-related
(focal) (partial) epilepsy and epileptic syndromes with complex partial
seizures, without mention of intractable epilepsy.” In simpler terms, a type of
seizure that we like to call “blackouts.” This appears as if I am daydreaming,
or caught up in deep thought, or for those more intense episodes, I will have automatisms
of lip smacking and playing with my hands.
What’s it feel like for me? For those in college, you know that feeling
when you blackout from alcohol? When you have an hour or two that YOU can’t
remember, but your friends tell you about all of the crazy things you said and
did later? Yeah. That’s me, but a few minutes.
It can be a bit disorienting to wake up sometimes in a completely
different place, or at the end of a TV episode, and can keep me “out of it” for
another 10 mins sometimes. But overall, not a big deal, and I’ve been on meds for
3 years now. Unsuccessfully.
Since this myriad of meds isn’t doing much, I was set up for a week-long
EEG at VCU, to truly define my blackout issue. At the end of a week of boredom
and great hair days, we found a small tumor on my brain surface that is causing
these seizures. BUT! If this tumor goes bye-bye, so do my seizures(we hope).
So, a Temporal Lobectomy to remove it became the solution.
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| EEG Fashion |
To prep for the procedure, my first pre-op appointments were on
Friday, and I learned a lot about how pointless a visit could be. Friday the 13th
certainly lived up to its reputation. The two scheduled appts were called a “History/Physical”
and an “Anesthesiology Pre-Surgical Visit”, making for a repetitive trip that
lasted 6 HOURS. Yeah, it was so much fun.
Both appointments were meant to gather information that Doctors could
use to ensure that my surgery will go over properly, and that I am healthy
enough to receive the operation. So I got my blood pressure taken, and pushed
against a PA’s hands to let them know I am fine. Yup. That was my health check.
There was also an extensive check into my current medications, the past
clinical history, and all of my odd health issues that I have accumulated
throughout life. Every time I was brought to a new nurse, I was asked my name,
birthday, address, phone number…you’d think they were planning to stalk me at
home or something. I also was asked about my drinking or smoking habits…and bonus
points to the PA that saved that question until the parent was out of earshot. Even
though it was a little scary that it took almost 15 minutes to describe my
pill-taking schedule to a staff member, we eventually sorted everything out.
The real exciting bit is my bag of beauty goods. Sorry Bath and Body
Works, but the hospital wins. As a part of my surgery home preparation, I must
use a special shampoo/body wash and mouthwash 5 days before the operation. Oh,
and a nose ointment, too. Real cute, I know. But, my Italian mane being as huge
as it is, I had to triple the number of containers that I left with. The nurse wasn’t
happy.
But some real facts did come from the visits. My first surgery is
scheduled in just 2 weeks, on January 26, and my entire hospital visit shall
conclude the 1st week of February. There will be 2 operations, and then
freedom, from the hospital and my condition.
Only one more hospital trip on January 23, before the operation, and February 2 is the real slice-and-dice. More updates to come as I get them,
and oh yes…a late HAPPY NEW YEAR!
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