E.M.U.- Looking for feedback/advice
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2ndchances
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Hi sunflower,
Nothing to be afraid of, really. The electrodes are annoying, but I'm sure you've already had an EEG done. The days can seem long, so make sure you bring things with you, like books, crosswords, or a laptop (if they allow it). I was able to use mine except for when it was charging.
I don't like to wish seizures on anyone, but I do hope you have some quickly, so that they get the information that you need, and your stay can be shortened! I went in on Dec 12th last year, and came home on the 21st (can't believe it's already been a year!)
Good luck, and keep us posted!
Nothing to be afraid of, really. The electrodes are annoying, but I'm sure you've already had an EEG done. The days can seem long, so make sure you bring things with you, like books, crosswords, or a laptop (if they allow it). I was able to use mine except for when it was charging.
I don't like to wish seizures on anyone, but I do hope you have some quickly, so that they get the information that you need, and your stay can be shortened! I went in on Dec 12th last year, and came home on the 21st (can't believe it's already been a year!)
Good luck, and keep us posted!
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Hi sunflower, as 2ndchances says, you'll find it pretty straightforward, maybe a little boring even. You might be interested in this thread:
http://www.coping-with-epilepsy.com/forums/f23/5day-eeg-help-16175/
http://www.coping-with-epilepsy.com/forums/f23/5day-eeg-help-16175/
Thank you to 2ndchances and Nakamova. I'm sorry to take so long to respond. I don't have internet where I live so I'm not on very often. Yeah, that's what I've been hearing; boring and annoying. Yet some people call it a vacation. Lying around trying to stay awake doesn't sound like my tape of vacation. 
Did either of you have surgery? Were you even considering it? Thanks for the good wishes, 2nd. I mention it when I talk about the forum!
Did either of you have surgery? Were you even considering it? Thanks for the good wishes, 2nd. I mention it when I talk about the forum!
2ndchances
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Hi again! Yes, I've had surgery. Twice, actually.
First, in 2001, after which I was seizure free for nearly 11 years. Unfortunately, the seizures returned in May 2012. I was fortunate enough to be a still be a surgical candidate again after my most recent stay in the EMU, so April 29th of this past year, the job was done, with any luck. I've been seizure-free since.
I'm not sure I'd consider it a vacation, other than in the fact that I wasn't having to cook, clean, or work! :rock: Otherwise, yes. Boring.
Yes, I've had surgery. Twice, actually. First, in 2001, after which I was seizure free for nearly 11 years. Unfortunately, the seizures returned in May 2012. I was fortunate enough to be a still be a surgical candidate again after my most recent stay in the EMU, so April 29th of this past year, the job was done, with any luck. I've been seizure-free since.
I'm not sure I'd consider it a vacation, other than in the fact that I wasn't having to cook, clean, or work! :rock: Otherwise, yes. Boring.
I see. Do you know if the main reason people go into the unit is to be considered for surgery? Initially, I thought that was the only reason. Why else would you spend all that time? Now I'm starting to think that not everybody goes thinking about surgery.
Gosh, you've had it twice? How do they determine your eligibility? Do they prefer to do it right away since you're already in that state, or is there a long wait while they study the info? Oh my gosh, I have so many questions and I feel like hearing from people who have actually done it might be more beneficial that the instruction sheets and disclaimers.
After surgery were you concerned that the seizures would come back at first? I mean, stress is one of my triggers. I'm pretty sure waking up each day wondering/hoping it doesn't happen is a tad stressful.
K. There's an essay's worth the respond to.
Gosh, you've had it twice? How do they determine your eligibility? Do they prefer to do it right away since you're already in that state, or is there a long wait while they study the info? Oh my gosh, I have so many questions and I feel like hearing from people who have actually done it might be more beneficial that the instruction sheets and disclaimers.
After surgery were you concerned that the seizures would come back at first? I mean, stress is one of my triggers. I'm pretty sure waking up each day wondering/hoping it doesn't happen is a tad stressful.
K. There's an essay's worth the respond to.
2ndchances
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I think there can be several reasons for going into the unit, but to determine eligibility for surgery is probably most common. The woman beside me was sent home after just 2 days, because they determined that hers were pseudo/non-epileptic seizures. If confirmed that they are epileptic seizures, I think it's also to determine if the seizures are specific to one area of the brain (part of determining eligibility of surgery, I suppose). Mine all started in the right temporal lobe.
Sometimes, more in depth tests may be required.
So while some may only be hoping to come out of the unit with answers, I'd say that majority likely have had a discussion that surgery could be a possibility.
I was lucky enough to get a last minute spot last December. My next appointment with my neurologist wasn't until February 12. They had only presented my case and my results from the unit to the surgeon the week before my appointment, so it did take a while for all the information to be compiled. From there, things rolled very quickly. I met with my surgeon on March 22 for the consultation, and surgery was scheduled for April 29th.
It was the waiting to get into the unit that took the longest.
I'm more than happy to chat anytime you need it!! My neurologist's nurse practitioner said that I was the 'poster child' for their department at my most recent visit in October. She asked if I'd ever consider speaking with patients that are facing the possibility of surgery, simply to share my experience. I've spoken to a few so far, and they've said it's been very helpful. I'm happy to be able to pay it forward too!!
Regarding your question about being worried after surgery, let's put it this way. I went from having 30+ seizures most days, being on disability from work, and not being able to keep my young son at home with me if I was home alone, to all of a sudden having none. Milestones were first counted in days, then weeks, and surprisingly, months. Soon enough, I was counting the years. I learned a lot about myself, and saw life differently because of my experience/surgery. It was no longer a part of my daily life, until the day they returned. Since my second surgery, I once again started to celebrate my seizure-free days. The cycle will repeat, but I refuse to live my life in fear. My neurosurgeon is very confident that he finished the job, where my first surgeon left off, and that I shouldn't have anymore. But, as we all know, we don't know what life has in store for us.
Sometimes, more in depth tests may be required.
So while some may only be hoping to come out of the unit with answers, I'd say that majority likely have had a discussion that surgery could be a possibility.
I was lucky enough to get a last minute spot last December. My next appointment with my neurologist wasn't until February 12. They had only presented my case and my results from the unit to the surgeon the week before my appointment, so it did take a while for all the information to be compiled. From there, things rolled very quickly. I met with my surgeon on March 22 for the consultation, and surgery was scheduled for April 29th.
It was the waiting to get into the unit that took the longest.
I'm more than happy to chat anytime you need it!! My neurologist's nurse practitioner said that I was the 'poster child' for their department at my most recent visit in October.
She asked if I'd ever consider speaking with patients that are facing the possibility of surgery, simply to share my experience. I've spoken to a few so far, and they've said it's been very helpful. I'm happy to be able to pay it forward too!!Regarding your question about being worried after surgery, let's put it this way. I went from having 30+ seizures most days, being on disability from work, and not being able to keep my young son at home with me if I was home alone, to all of a sudden having none. Milestones were first counted in days, then weeks, and surprisingly, months. Soon enough, I was counting the years. I learned a lot about myself, and saw life differently because of my experience/surgery. It was no longer a part of my daily life, until the day they returned. Since my second surgery, I once again started to celebrate my seizure-free days. The cycle will repeat, but I refuse to live my life in fear. My neurosurgeon is very confident that he finished the job, where my first surgeon left off, and that I shouldn't have anymore. But, as we all know, we don't know what life has in store for us.
I see. That number (30) makes me nervous because I have nowhere near that many. I mean, I don't wish I had more, but I don't want this whole thing to be a waste. I have to say, one of my concerns is money. How is the out of pocket? People keep saying it doesn't matter because life is more important, but I still want to know.
2ndchances
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Not everyone has that many.... I don't think it's a waste. Medications never controlled my seizures at all, but they did slowly taper off my meds anyway. The unit was closing for Christmas on Dec 21, so as the nurses said "You don't have to go home, but you can't stay here" :roflmao: For those that didn't have as many seizures, they'd have them stay away to be sleep deprived, which can be a trigger for some. I've read about others that had lots of caffeine, or did other things that would bring some on. Keep in mind, though, that it's a safe, controlled environment.
I'm not sure where you live, sunflower, but yes, of course the financial part of it is something to think about. Living in Canada, where we have socialized health care, I'm fortunate that it was not something I really had to consider. Sorry, I can't help more with the out of pocket.
I'm not sure where you live, sunflower, but yes, of course the financial part of it is something to think about. Living in Canada, where we have socialized health care, I'm fortunate that it was not something I really had to consider. Sorry, I can't help more with the out of pocket.
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Got it. I guess they'll tell me (here in the States) when the insurance authorization goes through. I have to wait until 30 days before to even know if it's approved. Yay. Thank you for your information. I will ask you more questions as they come to me, since you seem open to the communication.
2ndchances
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You're most welcome!
Good luck with the insurance... I sincerely hope it all works out for you, keep us posted!
Good luck with the insurance... I sincerely hope it all works out for you, keep us posted!
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hi sunflower,
i noticed the convo re: this in arnie's thread, so bringing it back here
i see you've been talking to my warrior, 2ndchances. i was on the forum for about a year and a half before i ran across her, who i (simply meant to be) found through her first epilepsy/surgery video here. i was facing brain surgery and was yet to give my surgeon my answer... until i found mel's video posted after she joined in november 2012.
after watching it i bawled for days then left a msg at my neurosurgeon's office on december 31st, 2012 that yes, i would have the surgery. these days mel and i are best friends, everything from our surgery to our personal lives to even spending a weekend together! i can't say it enough sunflower, this is the best place to be.
ok, so, the unit. it can get boring. it can get irritating. you may just want to yank the leads out and go home. but... it's okay. it is true that the seizure unit is mainly for the further decision of brain surgery, yep, there's no other way to put it. but other things can take place too such as mel said, finding out that the seizures are not due to epilepsy etc.
i went into it with the best intentions, b/c i truly wanted to know once and for all what was wrong with my head! had recently learned a lesion was found, so now they wanted to go deep and test. most units are 7 to 10 days, and if you don't have enough, or any, seizures in that time you're sent home, yay.
my unit was awesome (i wish they were all like that), and asked me to stay until i seized enough for them to have what they needed. VERY reluctant b/c, uhhhh, i need to make a paycheque this month?!. but i gave in after much prodding from the nurse and my boyfriend, and voila! after 17 days it was 3 grand mals and a few complex partials and that was it... they took the leads off for the last time and i was allowed to shower and a few days later back on meds and i went home.
on feb. 4th i'm 6-months seizure free after brain surgery... which never would have happened without being in the unit. THAT is the reason to endure going through it. boring, yes. worth it? YESSSSSS!!!!!!
pls keep us filled in, and know that mel and i can help you along your entire journey. between us we share the gamut, and are here to help or talk whenever you need
:hugs: love nat.
i noticed the convo re: this in arnie's thread, so bringing it back here
i see you've been talking to my warrior, 2ndchances. i was on the forum for about a year and a half before i ran across her, who i (simply meant to be) found through her first epilepsy/surgery video here. i was facing brain surgery and was yet to give my surgeon my answer... until i found mel's video posted after she joined in november 2012.
after watching it i bawled for days then left a msg at my neurosurgeon's office on december 31st, 2012 that yes, i would have the surgery. these days mel and i are best friends, everything from our surgery to our personal lives to even spending a weekend together! i can't say it enough sunflower, this is the best place to be.
ok, so, the unit. it can get boring. it can get irritating. you may just want to yank the leads out and go home. but... it's okay. it is true that the seizure unit is mainly for the further decision of brain surgery, yep, there's no other way to put it. but other things can take place too such as mel said, finding out that the seizures are not due to epilepsy etc.
i went into it with the best intentions, b/c i truly wanted to know once and for all what was wrong with my head! had recently learned a lesion was found, so now they wanted to go deep and test. most units are 7 to 10 days, and if you don't have enough, or any, seizures in that time you're sent home, yay.
my unit was awesome (i wish they were all like that), and asked me to stay until i seized enough for them to have what they needed. VERY reluctant b/c, uhhhh, i need to make a paycheque this month?!. but i gave in after much prodding from the nurse and my boyfriend, and voila! after 17 days it was 3 grand mals and a few complex partials and that was it... they took the leads off for the last time and i was allowed to shower and a few days later back on meds and i went home.
on feb. 4th i'm 6-months seizure free after brain surgery... which never would have happened without being in the unit. THAT is the reason to endure going through it. boring, yes. worth it? YESSSSSS!!!!!!
pls keep us filled in, and know that mel and i can help you along your entire journey. between us we share the gamut, and are here to help or talk whenever you need
:hugs: love nat.
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I've done my time at epilepsy monitoring units.I did my first one for 6 months at NIH National Institute Health when I was a senior in High school. Bring books crossword puzzles.Nothing be scared of you'll be hooked up to EEG with camera on you .
They will ask you to most likely bring someone from home to come and sit with you in case u seize. They did that to me at Emory I don't how many times.
medication wasn't even close to controlling my seizures last time I was in.You don't just go in to be considered for surgery I did that up at Montreal not Emory.
I 've had surgery surgery and it didn't work for me.
They will ask you to most likely bring someone from home to come and sit with you in case u seize. They did that to me at Emory I don't how many times.
medication wasn't even close to controlling my seizures last time I was in.You don't just go in to be considered for surgery I did that up at Montreal not Emory.
I 've had surgery surgery and it didn't work for me.
Alright, guys. It's right around the corner. Tuesday morning is the check-in. I've been talking about the things you've told me. I have to start packing!
As it gets closer I feel more and more confident. It's a perfectly safe environment. That's the whole point, right? I have a feeling that after it's over I'll wonder why I was even worried about it.
I was wondering if you get to meet other people from the unit. I saw that 2nd met a woman who was sent home a few days later. I think about how lonely it will be (even though my mom will be there). It would be interesting to actually see another person (patient?). I mean, you can't exactly walk around. But is there anysense of socialization?
I try not to think about surgery. Someone told me if it isn't an established possibility don't think about it. I will have so so SO many questions about that.
I have been having very conflicting feelings about all this. First I get scared because I am there trying to confront an enemy and I picture myself just dropping to the ground. I don't know what I look like when I have seizures. Do you all know about yourselves? I refuse to 'witness' it. I don't like watching others seize. It's horrible. I was watching a video and had to put my hand in front of my face so I couldn't see it. It reminds me of getting dressed: if I'm worried about how I look then I don't want to see myself in the mirror because I'll be self-conscious about it all day. I realize how vain that sounds, but I'm trying to say that when it happens at work (like it did last week) I don't want to have to think about what others have seen. I always ask my mom to describe it and she'll word it very mildly. I guess I'm still in that embarrassed stage; especially after it happened on the last date I went on. Can't remember if any of you are on that thread. Anyway, I was just saying that it scares me to think of how it will be if I just drop. Then again I will probably be in a bed. And then I wonder what it looks like on the monitors. Are people just sitting in a room with their coffee watching monitor screens? My mind starts racing and picturing all this stuff and when I try to search online it mostly comes up with links to the websites for specific hospitals and I don't think it makes sense to look at them because they are going to be different from mine, which is why I came 'here.'
Oh my. I just started going off. This stuff freaks me out. So, the other half is that it makes me kind of excited. It's like something to look forward to. I'm getting the sense from the people in here (On here? I think of this as a room.) that it's a really positive tool and only good things can come from it. I want to know what the specialists think of my seizures because none of my doctors can ever really classify them and it will be interesting to see what they learn since they will capture them on tape. Is there actually something in/on my brain? Is there a way to prevent this from happening? It will be so great if they can come up with some sort of idea.
It makes me feel like two separate people when I start considering the whole thing. I don't know which one to 'believe.' I think I'll pick the second one. I really appreciate you all letting me rant about it. I keep thinking how it will be no big deal once it's over. They tell me it takes 4-7 days. So I hear numbers like 17 and I start thinking again. Good thing they allow a laptop in there. I'm going to wear out this thread. 
I got my hair cut yesterday. (It looks completely awesome, by the way. Point is, I thought having short hair might help out a bit, and feeling fresh and new might be a good thing. I read something about using baby oil to get the stuff out?
Oh my gosh, Nat- the 4th is six months seizure free? That's wonderful. I have to keep that in mind as I start this process.
I'll go now so I can get ready for the Super Bowl party I have to go to . (Ugh.) Thank you so much to all who are contributing to this. I never ever thought about something like this as a resource. Have a wonderful day/night!
Casey
As it gets closer I feel more and more confident. It's a perfectly safe environment. That's the whole point, right? I have a feeling that after it's over I'll wonder why I was even worried about it.
I was wondering if you get to meet other people from the unit. I saw that 2nd met a woman who was sent home a few days later. I think about how lonely it will be (even though my mom will be there). It would be interesting to actually see another person (patient?). I mean, you can't exactly walk around. But is there anysense of socialization?
I try not to think about surgery. Someone told me if it isn't an established possibility don't think about it. I will have so so SO many questions about that.
I have been having very conflicting feelings about all this. First I get scared because I am there trying to confront an enemy and I picture myself just dropping to the ground. I don't know what I look like when I have seizures. Do you all know about yourselves? I refuse to 'witness' it. I don't like watching others seize. It's horrible. I was watching a video and had to put my hand in front of my face so I couldn't see it. It reminds me of getting dressed: if I'm worried about how I look then I don't want to see myself in the mirror because I'll be self-conscious about it all day. I realize how vain that sounds, but I'm trying to say that when it happens at work (like it did last week) I don't want to have to think about what others have seen. I always ask my mom to describe it and she'll word it very mildly. I guess I'm still in that embarrassed stage; especially after it happened on the last date I went on. Can't remember if any of you are on that thread. Anyway, I was just saying that it scares me to think of how it will be if I just drop. Then again I will probably be in a bed. And then I wonder what it looks like on the monitors. Are people just sitting in a room with their coffee watching monitor screens? My mind starts racing and picturing all this stuff and when I try to search online it mostly comes up with links to the websites for specific hospitals and I don't think it makes sense to look at them because they are going to be different from mine, which is why I came 'here.'
Oh my. I just started going off. This stuff freaks me out. So, the other half is that it makes me kind of excited. It's like something to look forward to. I'm getting the sense from the people in here (On here? I think of this as a room.) that it's a really positive tool and only good things can come from it. I want to know what the specialists think of my seizures because none of my doctors can ever really classify them and it will be interesting to see what they learn since they will capture them on tape. Is there actually something in/on my brain? Is there a way to prevent this from happening? It will be so great if they can come up with some sort of idea.
It makes me feel like two separate people when I start considering the whole thing. I don't know which one to 'believe.' I think I'll pick the second one.
I really appreciate you all letting me rant about it. I keep thinking how it will be no big deal once it's over. They tell me it takes 4-7 days. So I hear numbers like 17 and I start thinking again. Good thing they allow a laptop in there. I'm going to wear out this thread. I got my hair cut yesterday. (It looks completely awesome, by the way.
Point is, I thought having short hair might help out a bit, and feeling fresh and new might be a good thing. I read something about using baby oil to get the stuff out? Oh my gosh, Nat- the 4th is six months seizure free? That's wonderful. I have to keep that in mind as I start this process.
I'll go now so I can get ready for the Super Bowl party I have to go to . (Ugh.) Thank you so much to all who are contributing to this. I never ever thought about something like this as a resource. Have a wonderful day/night!
Casey
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thank you casey, that is so so sweet :crying: yep still surreal that it's only two days away.
-first off let me say 'congrats' on the positive attitude going into this, will make such a difference. it IS perfectly safe, you bet. if you're not using the bathroom you're in bed, and not to go to the bathroom alone either (your mom or nurse will stand right outside the door with it open a bit so they can talk to you). it's safe, and it's completely for a good cause. the idea is to learn about your future!
-i did talk to the other guy in the unit, he had his leads taken off for a shower (around day 4) so came in my room and gabbed. it was the 3rd time he'd done it tho, so it was a different convo that's for sure! do the same too when you're lead-free for your shower, get a good walk in around the unit for exercise, it feels great).
-i only know what i look like as my bf explains it thoroughly, helped me learn and know what to research. it wasn't until after surgery that i could watch a video of it, and now i marvel at what i went through for so many years, just to do the ultimate
-no worries that you'll see yourself seize, you won't. there will be a huge screen in your room and a camera attached, but it's for recording purposes only, you don't see yourself. in the nurses station not far from your room they have a screen to watch you 24 hours/day (lol so don't pick your nose or do any 'self-love' in bed!!)
-yes it can be boring but i felt excited too - it was a first for me and i had no idea what would happen, if anything, so i just focused day to day. lots of movies and crosswords. re: your laptop, yep you can have it in there but not use it plugged in. as you can't touch it plugged in your mom or nurse will do so for you when the battery's low, then you get it back when it's full.
-it's normal to feel like two people, mostly b/c it's a wide open door and we have no idea what side we'll end up on. making the most of it is best, just for stress and sanity.
-i was there 17 days b/c a lesion had already been found close to two years prior, as well as having epilepsy at that time for 18 years. around the 10 day mark they asked for another week b/c they were 'so sure' i would end up having them (was off all meds for 6 days at that point). and voila, 3 in 2 days and off came the leads. on meds day 14 and left morning of the 17th. they just wanted the guarantee that the lesion and seizures were in the same spot. yep.
i love your idea on a new hairdo, it will make you feel fresh and new and help ease tension you feel over the next few days getting ready.
GOOD LUCK!!!!!!!!! and keep us posted!
:hugs:
Well, this definitely isn't as bad as I imagined. The stay is comfortable and the people are nice. It is kind of frustrating having to receive help every time I have to go to the bathroom, but that's okay. It's not so much that I mind people being there, it's having to wait forthem.
They reduced my lamictal dose by half and took me off clonazepam. I had one generalized at 6am and when I met my doctor she said the machine had picked up two others. Oh man. So that means I probably have seizures without even knowing it. That sounds redundant, right? I have to say that is the most valuable part about this study so far. I know that I have seizures, I've been told what they look like, I can take my medicine on my own at home, etc. Being here with the machine that can read my brain waves when I'm unaware is very interesting.
The doctor says I shouldn't be here too long because I've already started having seizures, but they aren't sure how many more I need. It sounds like most of the activity is on the front. I know I'm going to have to have an MRI later and several other tests. I asked my doctor if they ever let someone out of the hospital already knowing if they are not eligible for surgery. She said yes. I wanted to know because it makes me feel better that there's a chance that there could actually be an immediate answer for something. It's not that I feel strongly either way towards surgery, but it would be nice if there was a for sure answer about something.
So just here with my mom passing the time waiting to see what happens next. Mine are usually in my sleep. I hope that's what happens again tonight. I feel safer well I'm already relaxed. I hope everybody is doing great and I appreciate the feedback.
They reduced my lamictal dose by half and took me off clonazepam. I had one generalized at 6am and when I met my doctor she said the machine had picked up two others. Oh man. So that means I probably have seizures without even knowing it. That sounds redundant, right?
I have to say that is the most valuable part about this study so far. I know that I have seizures, I've been told what they look like, I can take my medicine on my own at home, etc. Being here with the machine that can read my brain waves when I'm unaware is very interesting.The doctor says I shouldn't be here too long because I've already started having seizures, but they aren't sure how many more I need. It sounds like most of the activity is on the front. I know I'm going to have to have an MRI later and several other tests. I asked my doctor if they ever let someone out of the hospital already knowing if they are not eligible for surgery. She said yes. I wanted to know because it makes me feel better that there's a chance that there could actually be an immediate answer for something. It's not that I feel strongly either way towards surgery, but it would be nice if there was a for sure answer about something.
So just here with my mom passing the time waiting to see what happens next. Mine are usually in my sleep. I hope that's what happens again tonight. I feel safer well I'm already relaxed. I hope everybody is doing great and I appreciate the feedback.