[NPInfo] My neuro update and new diagnosis

Tue Apr 15 22:11:25 PDT 2008

Linda,

Sorry I'm so late into this...got waaaay behind. In any event, what a scary
experience that must have been for you to be a patient and feel as if you
had to escape a place in which no one listened to you. Your description made
me feel your frustration, terror and anguish to gut-wrenching degree. I
can't even imagine how much worse it would have been for a patient with NO
medical or nursing background!

I guess the good news is that you know what's going on, even if there's not
much literature available to guide the next steps. Thank goodness you are
well-educated enough to seek the answers and help you need to continue your
recovery...and I hope you find them.

My heart goes out to you, and my prayers continue with you and your family.
Thank you for your incredible generosity in sharing your experience so that
we can understand our patients better and in turn be better advocates.

Cyberhugs,
Diane Dito

-----Original Message-----
From: npinfo-bounces at nurse.net [mailto:npinfo-bounces at nurse.net] On Behalf
Of Linda Marie De Zago
Sent: Wednesday, April 09, 2008 7:10 PM
To: 'NP Info'; acc-circle at listserve.com
Subject: [NPInfo] My neuro update and new diagnosis

Dear Colleagues, 

My neurological journey continues. 

To refresh your collective memories, I was a new NP (8 months) when a
cavernous angioma in my left frontal lobe hemorrhaged (Aug 2007). I
underwent a craniotomy in October 2007 at Barrows Neurosurgical Institute. 

I was cleared to return to work part-time in Jan 2008, had four seizures in
13 business days, and was subsequently fired. 

My seizures persisted and my neurologist kept increasing and adding
anti-epileptics. I disagreed with this practice and researched epilepsy
centers in my state. I had a consultation with Dr. Passaro at Bayfront
Medical Center near Tampa in March 2008. Bayfront is a Level 4 Epilepsy
Center. I was admitted on Monday, March 31 at noon. 32 leads were attached
to my head and I was placed in a padded hospital bed. My brother-in-law
stayed the first night with me. The only medication discontinued was my
Xanax. I was sleep deprived the entire night. The following morning at 8 AM
I had my first generalized seizure complete with SOB and CP. I thought I was
going to be intubated. 

In the afternoon the EEG tech guided me through 3 minutes of
hyperventilation and then started the strobe light test. I had a full
generalized seizure but was cognizant throughout. The seizure lasted about 7
minutes and my body took another 20 minutes to calm down. I was given Reglan
for nausea and then developed heart palpitations and diarrhea (this is
pertinent). 

Once Dave (my brother-in-law) left to get his much-needed rest, I was no
longer allowed out of my bed without an escort - not even to go to the
bathroom (ugggghhhh). I tried not to pester the RNs about my building
anxiety; however, every hour I kept pleading, "I'm very anxious. Please call
the doctor. I need something to take the edge off." The doctor was never
notified of this. 

By 8 PM I was in a state of panic. I climbed out of bed and walked to the
door. My RN told me to get back in bed and I refused. I told her I needed to
get out and walk or else I needed medication. She told me that she had to
check on another patient and would then call the doctor. She pleaded with me
to return to bed because she was worried that I would slip on the tile
floor. 

At 8:10 PM, with all 32 EEG leads connected to my head, I got out of bed,
unplugged myself from the monitor, ran out of the room, down the hall, and
down the escalator to the first floor. I found a door leading to the outside
but there was a sign saying "no re-entrance after 8 PM." I was aware enough
to know that I didn't want to get locked outside. I hadn't thought to grab
my cell phone before I left my room so I found a public phone and tried to
call my parents collect but I couldn't get a dial tone. I started walking in
circles until I found a bathroom and hid in it. 

A Lamaze class must have just let out because there were many pregnant women
in the bathroom. I cried and ripped off all of the EEG leads from my head
and face while several pregnant women hurried out the door. I must have
looked like a crazy woman. 

Finally I decided to go back upstairs to my room but couldn't found my way
back. By this point I was hyperventilating and leaning on the walls for
support. The overhead intercom was blaring "Linda De Zago, please return to
your room immediately." One of the techs found me and brought me back to my
room where my concerned and frustrated RN awaited me with 5 mg of Valium. 

Dr. Pessaro rounded at 10 PM and explained to me that I have Psychogenic
Non-Epileptic Seizures (PNES). Basically these are episodes of movement,
sensation, or behaviors that are similar to epileptic seizures but are not
caused by abnormal electrical discharges. Anti-epileptic drugs will not help
my condition so I am very slowly being titrated off of the Keppra first.
Most PNES are physical manifestations of psychological distress (usually
sexual or physical abuse). HOWEVER. . . .my case is different because my
seizures started only after my massive brain bleed and surgery. Therefore,
my psychiatrist believes that my seizures are neuro-related versus
psych-related. I have been researching and found a small amount of
literature that describes "New-onset psychogenic seizures after intracranial
neurosurgery".  The brain's frontal lobes are responsible for the
recognizing, processing, and responding to stimuli. Since my brain injury I
have had seizures when I am over-tired, over-stimulated, etc. It all makes
sense now. 

I have a meeting with two separate neuropsychologists tomorrow and Friday
since therapy will be paramount in my recovery. 

In the meantime, G-d bless Xanax.

Respectfully,

Linda Marie De Zago, MS, ARNP-C

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