I was there in January of last year. Although they were not able to capture seizures at that time, I was accepted as as a surgical patient. I made a return visit in May for further testing to capture the seizures necessary for the focal point. As of today, I am now over 10 months seizure free after my third surgery. Just like in your son's case, it is hard but very necessary. I'm thankful as well.

Wow @amckinley75 - Five days hooked up and waiting waiting waiting. That could've been easy. I assume at your second monitor visit they were about to capture the seizure activity necessary to go ahead with surgery. What was different during the May testing?

When the monitoring unit did not capture seizures, and I was having multiple seizures at a different rate, the Epilepsy Board decided to take me on still as a surgical patient. The next step was to find out where they were coming from exactly. I had a stereo EEG, or SEEG at Mayo. This is an inpatient, innercranial EEG, where the leads are placed directly inside to finite the exact area of seizing for surgery. You are under anesthesia the entire time, and it could take anywhere from one day up to a month to seize. Very scary being under that long... they scared the seizure out of me. I seized in one day.

Thank you for explainging, @amckinley75. I can imagine that was scary. And thank you for sharing more of your journey in the discussion
- Living with epilepsy - Introduce yourself & meet others https://connect.mayoclinic.org/discussion/living-with-epilepsy-introduce-yourself-meet-others/?pg=5#comment-79089

Your post is 2014 so I hope your monitor went well. I'm new to this site so I'll answer anyway since it may be being seen. I had mine installed for my doctor's records/evaluation because of increased medication with no change.

NOTE:
A) Monitors at Mayo are very likely not at all like my story, so this story is likely for elsewhere. B) My story is a bad one but it may represent only 1% of all stories.

1) For my 3 day observation, cost was 10k in 2015. I'm on Medicare. My co-pay was 1k. Definitely ask your insurance company (not MD, he may not know) what the costs are, before your install(s). 2) My doctor's office uses a contractor service to install. Installer did what was a good hook-up, I think. She tested unit, answered my questions, did not seem to be confused or have equipment issues (at install office). Mine worked fine in office. 3) Get contractor's info/name from technician and call to ask for their charges to your MD. Probably can't/won't tell you. Ask if it's going to be 10k at your end. May still not answer but they may have a reaction, for you to listen to. Don't be afraid to insist that you see a unit at their office. 4) I had the wires and cap, cable for getting to the collection unit, which was not inside a backpack. I had to get my own backpack later. 5) Installer had handed entire unit to me just before leaving. Left hand had cable, right had the the unit. Very clumsy situation. 6) Unit failed on day 2. Not wires, battery dead. I lived 60 miles from Denver install office. 7) The unit had a clip on outside to hold unit on my belt, that was broken. Unit was dirty. Cable was hanging from cap wires to my back that I used when I got home. Too much weight at the attachment. Could easily have pulled a wire out of cap. Wires/cable pulled directly on my skin. Wires should have attached to cap, then down to backpack. 8) Contractor used an answering service when their office was after hours, so no one to answer questions when unit failed on day 2. Service purchased by contractor did not have a # for me to call and no "neurologist" to return call, just answering service taking messages. 9) Wires at cap are attached to skin well enough that if unit fails, you will have to wear cap (possibly entire unit) until your un-install date. 10) This happened to me 2 times. The first time I went back, re-installed and 2nd failed middle of day 3. In 2015 I had pretty much the same story. I refused to get another unit installed when the 2018 unit failed. 11) Do try to get the contractor's name before install. They may refuse. Ask them what their answering services are. Install tech will not be that person. At day of install, check unit for broken parts, dirt and a backpack to carry. Ask installing tech if they have ever heard of stories like mine. Techs seem to contract with the unit owners so, that may be the reason for not answering. Ask your neurologist if he has ever heard of failed units. Get neurologist's off-hours # for service or, with an actual neurologist. If she/he can't... find another neurologist because you are at the very least a 10k patient with unit on and, he or another neurologist who knows about your install, should be available. 12) Think about days for wearing unit and your schedule so that you can be doing the least amount of physical activity with unit. Take a shower before install date. Get movies, reading material, computer. My 2018 unit dates (remembering 2015), I literally sat in a recliner for all but dinners etc until the day unit failed. 13) If your neurologist tells you (like mine), "Oh a day's worth of information is good enough anyway, start looking for another neurologist. Get all your records before that. Good neurologists here and in Denver (practicing a specific neurological condition, only) are hard to find.

Bad story I know, but again, mine may only be a 1% story.

Hope your dosen't go this way. The collection of unit info is going to be very useful. Hope your collection information helps.

Rick

Hi Rick @1634517678, welcome to Connect. Thank you for sharing your story and providing tips of how to avoid the situation you found yourself in. Am I correct in understanding that you were using a monitoring unit at home and not in a clinic setting?

I went to the office where the unit was attached and then home. This unit was for sampling only and not an attempt to start a seizure.I have been in a hospital setting overnight (5 days) where the intent was to start seizure activity... Sleep deprivation, no food or water were a few of the trigger attempts. That was 6 years ago. After my email here I read some of the in hospital stories. They are valid, being there is a test of sanity, or leaving with none. In the last 6-8 years to have a patient seizure in that setting with attempt by deprivations etc is considered questionable. Reason is, the real intent is to make the patient seizure free. More seizures usually means continued/repeat seizures. And, the lack of information gathered was too frequent, with too few patients. Not exactly dropping water on one's forehead for hours but, that may be the thought in 20 years. 60 years ago there were only 2 drugs, and mostly general practitioners. 75 ago being tied to a chair in the back room was not unheard of. So, some of us, are fortunate to an extent(???).

I also forgot a little history: I am 62 years old and have had seizures since 23. At 23 I had a g-mal in my sleep. From 23 to 43 meds were on/off half of the time with the few meds available at the lowest mg. 43 to 53, 2 different petite mal increased in frequency to having moderate amounts of meds, but 24/7. During the 43 to 48 there were only 5 g-mal and same as all other g-mal, only during sleep. At 50, I had a seizure (type not identified) while I was conscious. Similar to petite mal with disorientation etc, but that disorientation feeling was all day long for 2 years with 75% memory loss for all past events. Memory then was not remembering where shoes were, not recognizing them when found. Able to go walk to grocery store with box covers torn off at home to match to the items in the store, and I looked 50% normal, as long as I didn't talk. 10 or 12 items would take 60+ min. I couldn't write a sentence or email. I can go on with that 50 years old to now (62) if someone is interested for their own use. Since 50, it has been mostly memory issues. 50% with variables is back. More is not expected per neurologists.

Colleen,

Not a clinic. At home. Mobile with back-pak, 3 days if it had gone full term. Both went only 1-2 days, 2 sampling terms, a couple years apart.

Sorry so late. I received your 2 other emails in the last 2 days (from you? or forwarded by you, from a reader?) but they don't really look like something I need/should comment on???

Thanks for elaborating about home monitoring, Rick.

It was me that @tagged you in a conversation about invasive EEG monitoring. I thought you might have experience to share. No worries if you don't. I'll remove you from the discussion.