Chat and Community Forums Closed

Due to the popularity of social media, we have seen decreasing engagement on our forums and chat. Please know we want to keep talking to you about epilepsy, seizures, and what you need. We want to stay connected with you.

Community Forum

INTRACRANIAL MONITORING W/GRIDS?

HAS ANYONE HAD THIS?I'M SCHEDULED TO HAVE INTRACRANIAL MONITORING W/GRIDS BY WAY OF CRANIOTOMY.IF I'M LUCKY I WILL HAVE A RESECTION RIGHT AFTER.I HAVE LEFT FRONTAL LOBE SEIZURES.CAN ANYONE SHARE THEIR EXPERIANCE WITH GRID PLACEMENT?

Comments

Re: INTRACRANIAL MONITORING W/GRIDS?

Hi gregg,

Yes, I had both grid and depth electrodes placed. I woke in recovery and immediately placed my hand to my head (covered with a large turban-like bandage) in extreme pain. Then, a wave of nausea hit. I got sick, which intensified the head pain. I had been warned of major headpain, prior to the surgery, but nothing could prepare me for that intensity. Thank goodness, they have lots of meds in the hospital, which relieve the pain for a while.

I got lucky, and had my seizures rather quickly. My complex partials hit at 4 am the day after the electrodes were placed. I had 3 complex partials, showing the same focal point. The surgeon decided that I was an excellent candidate for removal, and that focal point removal would be done the next day. I was put back on phenobarbital and things were fine for the rest of the day.

I woke to simple partials very early the next morning (around 4 again). They came fast and hard. By 7 am, they had turned into complex partials and I was status epilepticus. 20 minute and 30+ minute complex partials...with only a minute between. I, of course, have no memory of the cp's. What I do remember is the auras hitting very hard one after another. I was absolutely exhausted!

The next thing I remember is waking hours after the surgery. So, I made it! It has been almost one year since my surgery..3/22, and I've been amazingly seizure-free since July. I did have 4 auras up til then, but that's it. Certainly a major improvement! I am still on phenobarbital, and look forward to finally being able to switch.

Major toughies that I can think of were:
1.) Intense headaches- nothing relieved that intense pain for me (33% have that trouble)
2.) Lazy left eye- took 3 months to build strength again. This caused a lot of emotional trouble for me, as I was embarrassed by niece & nephew comments.
3.) Weight loss- I lost a heck of a lot of weight, because I couldn't hold anything down...maybe due to pain relief nausea??..it took major committment and time for me to look normal to myself.
4.) Emotional rollercoaster- in the beginning, the roller coster was very intense. Up and down (thankfully, I had ups :) within minutes. After a few weeks, I became very down and battled depression. I kept busy, worked out, saw a therapist, and it wasn't enough. I had to add anti-depressants, and continue with the rest to make the depression slowly ease.
5.) Word-finding difficulty- recall is very challenging. That causes a lot of frustration within myself (which contributes to my depression).

I don't know if any or all of these troubles will be experienced by you, especially since you're having a different area worked on. But, this is my experience. If you have any specific q's about Mayo in MN, let me know. That's where I've gone. Best of luck to you, I hope that everything goes well!

Heather

*refractory seizure surgery on left temporal lobe 03/06*

Re: Re: INTRACRANIAL MONITORING W/GRIDS?

greggs - ALL OF THAT WAS VERY HELPFUL.I HAVE ALREADY HAD MONITORING WITH THE STRIPS.NOW IT'S TIME FOR GRIDS.NEUROPACE WANTED ME TO GET THE STRIPS PLACED BEFORE I COULD GET THEIR IMPLANT.WELL,THAT DIDN'T WORK SO WELL FOR ME.NEUROPACE SAID THEY COULDN'T LOCALIZE ENOUGH TO DO THE IMPLANT AND IT BE HELPFUL.SO MY DOCTOR(UW MADISON)REFERRED ME TO MAYO.WHAT DO YOU KNOW!THEY DO A SIMPLE MRI AND FIND SOMETHING!I'VE HAD AT LEAST 10 MRI THROUGHOUT MY LIFETIME AND NOTHING.AND THAT LEADS ME TO GRIDS AND POSSIBLE RESECTION.I HAVE AN UNIMPORTANT QUESTION FOR YOU HEATHER.WERE YOU IN THE NEW ROOMS AT MAYO? THANKS.
GREGG

Re: Re: Re: INTRACRANIAL MONITORING W/GRIDS?

Hello again,

Yes, the Mary Brigh (sp?) section of St. Mary's was a few months old when I was there. Who's you epi? Do you know the neurosurgeon? I've worked with many epi's throughout my Mayo experience...just curious.

Hope it all goes well for you! Btw, please don't shout..ty :)

Heather

*refractory seizure surgery on left temporal lobe 03/06*

hello, the neurosurgeon is

hello,
the neurosurgeon is dr. moore. i've been seeing dr. gregory casino he's a good guy.i'm leaving on sunday the 11th and will have pre-op stuff and then on weds. i get the grids put in.i will let you know how thing went as soon as i feel up to using the computer afterwards.hopefully i will be able to report that i have a smaller brain than when i left.
thanks
gregg

Re: hello, the neurosurgeon is

Hi again,

Dr. Casino was the epi in charge during my surgery. My primary epi is Dr. Britton. Dr. Casino was very good. After my second surgery, I could barely walk, because of my vision (I guess). The neurosurgeon was eager to send me home. Thankfully, Dr. Casino recognized that I wasn't physically ready to do it and told me to stay another night. So, I give him thumbs up :0

I wish you the best of luck, take care!
Heather

*refractory seizure surgery on left temporal lobe 03/06*

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
24/7 helpline
P