← Return to Seizures: Monitoring device

Discussion

Seizures: Monitoring device

Epilepsy & Seizures | Last Active: Sep 26, 2020 | Replies (17)

Comment receiving replies
@1634517678

HEADS-UP on monitoring equipment. This post is not at all meant to frighten or keep you away from doing the procedure at all. This is about cost and quality of equipment. It only represents my experience and things I would do differently for my installation. I have used the unit 2 times over 3 years, 3 days each time. Your unit most likely will be installed by a contractor working for your neurologist. Neurologist reads information (just a print-out, spread sheet), that was printed by contractor. No paperwork comes out while using unit.

10+ wires are glued to the head in various locations. Those attachment wires come from head, with a main cord (approx 3/4 round) to a small backpack, like what you'd use for school, and worn the same way. Monitoring unit (approx 2x3x6) with battery pack. Total weight around 3-4 pounds. The wires are uncomfortable and your daughter may not like that much but, do explain it to her first.

EQUIPMENT: Both times my unit had broken parts taped on, unit dirty, backpack torn enough that I had to use tape and paper clips to hold backpack material in place. Both 1st and 2nd unit had batteries that.ran out before the 2nd day was over, and it doesn't let you know it stopped while wearing. I didn't find out until my follow-up visit with my neurologist.

PRICE and then what to do: The amount my neurologist billed was 10k. My Medicare A and B paid 9.Get the price yours is going to cost from the neurologist before!!! install!!,,, then, DEFINITELY call your insurance to see if it's covered and how much, and get agents name!!! WHAT TO DO: If when you go to to get the unit put on,,, Very First Thing... you need to politely demand to see all parts, before wire attachment is started, before anything. If it is dirty, broken/worn parts etc, you "stop right there", get the name of the contractor, saying you want a clean, not broken or (whatever is wrong) and that you will be back when it's scheduled next. Very unlikely they will have another right in that room or building. Same story if it happens again. Before my 2nd visit I asked for another contractor and asked for the name of the contractor. I was told by neurologist that that one company was the onlyone they they use. This happened in Denver so I'm quite sure there were more.

NOTE 1: I was already having trouble with my neurologist. We epileptics know the quality and possibilities of finding a good one, but keep looking if you have not. That's not part of this story really, except for getting a different contractor and neurologist later. You may very well get another neurologist who may think the test is important, but you'll have that discussion on first or second visit. No laws about seeing 2 neurologists at a time, and ask the new neurologists who his contractor is.
NOTE 2: If a person is going to get charged 10k for this unit, it needs to be 100%, tip-top condition. That unit may be worth 20-40k but it's still their responsibility to provide what they have stated that the service is, to your neurologist! 10k is a nice used car. In my case, the neurologist got billed by the contractor, paid it, maybe 6-7k, and even after my complaint to him, then billed me. I had already said, "I'll do another 3 day unit, but if I'm paying for 3 days, that's what I need. My neurologist even had the _____tyhj478+ to tell me, "2 days is good enough."

So, that's my story and,,, it may only represent 5% of the contractors out there. If your neurologist is good, he should be mad about what happened and demand another unit, and 3 more days from the contractor. I wouldn't bring this kind of a story up normally but a) the test is important, way beyond a couple office visits and, b) way to expensive to get something less. Always remember,,, You Are Purchasing Your Neurologist, and he works for YOU and you pay him for that service... Thank you.

Jump to this post


Replies to "HEADS-UP on monitoring equipment. This post is not at all meant to frighten or keep you..."

Thank you for sharing your experience with us today. What eases my mind (so to speak), is that we’re treated differently. I have zero insurance. My neurologist has never physically seen me. To be fair, I was diagnosed in early March right before lockdown. I’m on lamotrigine & doc is switching to another Rx, starts with a ‘D’ because my seizures are ramping up (3 per day, I don’t always pass out).
Is there Really any way to explain what this does to the physical body, but somehow worse is the enormous psychological toll. It’s a really lonely road, it’s scary and exhausting.
I’m sorry, actually heart hurt that you’ve received sub-par service. Dismissive behavior by the people responsible for Helping You.
Be as well as you can be.
~Erica

@eeegreen and @1634517678, you're right. There is a lot of stigma associated with epilepsy. You may wish to continue talking about that in this discussion:
- Stigma and Epilepsy (or any stigma) https://connect.mayoclinic.org/discussion/stigma/

I'd like to return this conversation back to recommendations for Epilepsy Monitoring Devices.

@1634517678, I'm sorry that you had such a poor experience with remote monitoring with your neurologist. Can you help me understand? Usually professional monitoring is done for a short period in hospital in an Epilepsy Monitoring Unit. Other members have shared their experiences here:
- Been to an Epilepsy Monitoring Unit? What’s it like? https://connect.mayoclinic.org/discussion/been-to-an-epilepsy-monitoring-unit-whats-it-like/

It sounds like you had a temporary mobile unit that was monitored by the neurology team remotely, correct?

This differs from the question that @mmas is asking (I think). She is looking for a device that would alert her to a change in her daughter's activity, especially at night.

@mmas, I found several articles reviewing various devices that might help you with your search:
- Seizure Monitors Price and Evaluation April 2020 https://epilepsyfoundation.org.au/wp-content/uploads/2020/04/Seizure-Monitors-Price-and-Evaluation-April-2020.pdf
- Nighttime Seizure Activity: Will Your Family Ever Sleep Peacefully Again? https://www.epilepsy.com/article/2014/3/nighttime-seizure-activity-will-your-family-ever-sleep-peacefully-again
- The Role of Seizure Alerts https://www.epilepsy.com/learn/early-death-and-sudep/sudep/role-seizure-alerts

To know what type of device would work for you, you can start with questions like What do you want the seizure alert device to do? Alert you or track activity?
Do you want to use the device only at home? Only at night? What type of device will your daughter be willing to use or wear?