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  #21  
Old 11-03-2013, 01:17 PM
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they feel more tired than dry, i find i rub them (more than i should, to the point i've abrased my right eyelid twice. ouch.). good for you to keep a list of (is this normal?) for your next neurologist appt (or if you're hooked up with an epilepsy nurse she'll answer ya right away). it's likely just a brain re-building thing as that has its own list, and for now if the eyedrops make you feel better i wouldn't worry too much. unless it starts affecting your vision.
my main issue is that the left side near the temple is still swollen, has only gone down about half in almost three months. people say it's not that noticeable but it is to me, i'm worried that if it doesn't get better soon my face will end up unbalanced BUT i remind myself that after such a major life-changing surgery it's normal for things not to go back identical to before. i've heard others say it's just a scar proving us being soldiers. ha, i can live with that i guess
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Old 11-03-2013, 01:49 PM
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Jimbo, I've heard the ticking noise too!! I was out for a run at the time, thought it was my headphone, so I took it out, and still heard it. Weirdest thing ever. I've not heard it since, even while out running, so I've sort of disregarded it, but boy, was that annoying.
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  #23  
Old 11-03-2013, 04:31 PM
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Qtowngirl: It's just a force of habit for me, I keep finding new things to worry about at this stage. When you say it's swollen, is it just the area around the scar, or all that side of your head?

2ndchances: It's good it stopped quickly for you. It's getting less and less for me each night, so it must be something to do with how the brain is healing I guess. But still, it's a bit freaky when it happens.
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  #24  
Old 11-09-2013, 02:30 PM
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So, new question.... if you've had the surgery, how long did the swelling last around the scar, or affecting your face?

My swelling on the left side of my head had started to go down over the last couple of weeks, but then in the last two days it swelled back up again, not quite as bad as it was in the hospital, but still sore, and I'm just wondering if this is normal as part of the recovery?
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Old 11-09-2013, 02:59 PM
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hey jim )
surgery was 3 months ago today and it's still swelled a bit. was VERY swollen three days after surg, looked so funny, dark blue under my eye, which is still in a very small way noticeable), and if i'm looking straight at you it's noticeable that on the left around my temple is puffy. it's normal, don't worry about it too much. you're so fresh still my dear, for most post-surg patients it can take months for it all to go back to normal, and sorry to say, but it may never be 100% the same as before. but that's okay!
you're an epilepsy and brain surgery warrior my friend, a few little changes will become something to shrug about
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  #26  
Old 11-09-2013, 03:34 PM
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Once again, thank you qtowngirl.

Just out of curiosity, does the puffiness you mentioned around your temple hurt at all?
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Old 11-10-2013, 11:15 PM
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no not really. for a couple months the majority of pain was around the scar itself and farther towards the back of my head (only on and off tho); at 3 months it's about 1/3 of that, only in the middle of the scar. only hurts once or twice a week, but when it does i need to hold my head and rub for few minutes. then it's gone!
at your stage the most important thing is rest, even if you're not sleeping. question: did they give you anti-swelling to go home with? everyone except one doc figured it was best to take a week home b/c i had been so sick and wasn't reacting well to anything. it was the brain-swelling med you're on immediately after surg, and doesn't affect outside swelling but can help ensure safety so soon after. just curious...
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Old 11-11-2013, 05:25 AM
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They didn't give me any anti-swelling medication, and it didn't even occur to me to ask for any. They did give me a type of morphine (which I'm trying not to use too much of unless the pain is really bad), and I've heard that can have a side effect of reducing swelling, but that's probably not a good idea to use too much. I'll be seeing my doc later this week, I'll ask him about the anti-swelling stuff.
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Old 11-11-2013, 10:17 AM
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unfortunately no, it's only one used right after surg. was explained to me that it's based as a 24-hour drug (intravenous) right out of surg, then they take you off if everything's okay. not normal to send the pill version home, but as my whole system reacted so bad to being on 6 hours of anaesthetic, majority of nurses/my surgeon said it was a good idea. i only took for a few days after and still have the rest. just to be clear also... it's a 'brain' swelling drug, not for swollen skin or muscles. that's why the one doc was pissed at them for sending me home with some, 'that's not normal!' but they told me when he left my room that he's usually tense about everything.
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Old 11-11-2013, 12:48 PM
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Ah I see....in that case, maybe they did give it to me. I can remember I did have a drip attached to me when I woke up in the recovery room after the surgery, but I was in no state to ask what was in there. They took it out maybe a day later, so it could have been in there, but they didn't tell me about it.

So if I understand you correctly, the swelling I'm seeing on my face and around the wound: That doesn't signify brain swelling, is that right?
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Old 11-11-2013, 07:11 PM
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right. and this is going from what i was taught/told after mine. the swelling (of skin and muscle) is COMPLETELY normal, and would be odd if you didn't have any. just part and partial of such an intricate surgery, and as i said it's normal to be like that for months.
unless you're in unbearable pain, bleeding, feel seizure-ish, blacking out, throwing up, slurring... or anything else very off, esp. if it happens out of nowhere. my only issue was a sudden pain in my lower back oh-my-god-it-hurt, so i called my epileptologist nurse and she said, 'relax, everything will feel a bit off for the first few weeks, you'll be fine. just take it as easy as you can, heating pads/cold pads, whatever eases the pain and take your painkillers.' i winced, but she was right. i put up with it, and within a week it was completely gone.
the way a body and brain has to adjust and settle in after brain surgery is insurmountable, but it doesn't last. like i said in another post, most important thing is not to stress about it - if anything that will work opposite, which would be no good friend. you can do this soldier, just a little patience (well ok some days alot!) is required.
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  #32  
Old 11-12-2013, 05:03 AM
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That's definitely good to know, thank you again.

I'm still finding all this hard to get used to, and a lot of this stuff wasn't explained to me in the hospital, so I was worried something was going wrong. I need to keep reminding myself about that whole patience thing....
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  #33  
Old 11-12-2013, 09:30 AM
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:HUGS:
i feel bad for you re: the hospital, should have given you as much take-home info as possible, whether on paper or verbal. i do feel very lucky with the team i had, from epileptologist to surgeon to nurses post-surg. loved everyone.
do you have an epileptologist nurse? makes the world of difference. if not the best thing to do is keep track of how you feel and take the notes to next neurologist appt. tell them in detail how you've been feeling and i can almost bet they'll tell you it's normal. everyone's different, some only have pain a week, some are a year or better. unfortunately no surg can depict what will happen... literally the only one that 'knows' that is our brains. damn things ey?!
just keep us posted on how you're doing, we can chat about anything. or pm me if ya want. it IS hard to get used to, huge life change, and like i said before, if you felt completely normal, completely like yourself it would be odd, so roll with it

and at the very least if you are just too worried something's wrong, see your doc, call the surgeon, call the epileptologist centre... there's a number of people that will know if it's an issue. like we always say on here, we gotta take care of our e problems ourselves, it's the only way to feel even a little sane.
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Old 11-12-2013, 12:21 PM
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I don't have an epileptologist nurse, but a seizure specialist (That's the guy I'm referring to when I say neurologist, he specialized in epilepsy). He's my consultant, and knows my case very well, I've been seeing him for years, so he's always good to sit down with and talk about whatever problems I'm having. I'm already making a list of what to talk to him about when I see him this week.

And I will keep you up to date. I'm sure I'll be around here anyway, now that I've found this site. And in the meantime, as you say, I shall roll with it.
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Old 11-12-2013, 12:46 PM
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good on the list, makes a big difference with e, sooo many questions, pretty much all the time. like wtf is this? wtf is that? and whyyyy the f--k?
lol, rolling with it is good too. looking forward to seeing your progress!
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