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Old 03-26-2017, 11:50 PM
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Question Surgery Fears...


Hey everyone
So, I've found a neurologist who believes I could be an excellent candidate for surgery. We are starting the eligibility testing this week, just to confirm. I had asked another doctor about it years ago, but was told it wouldn't work for me, even though they couldn't give me a reason. My new doctor is very optimistic, talking about getting me driving for the first time ever and completely seizure free, which makes the surgery sound like a dream come true.
However, I'm not so naive as to think that there are no risks to this; I know how serious brain surgery is, and that there could be some very detrimental side effects that last the rest of my life. I have a 9-month-old baby, and want to have more children. I am very concerned that I may not come out of this surgery the same person, able to be the mom/wife that my family needs.
I've read stories of people who had horrible mood/anger problems, memory issues, or even worse seizures. I want to be able to take care of my kids, not have them take care of me, and I definitely don't want to ever hurt them. That's the biggest reason I want the surgery: I'm always afraid of dropping/falling on my child, or seizing and not waking up and leaving him alone for hours. I can't let that happen.
What I'm really wanting to know is, how many of you out there were able to be parents after surgery? I mean, especially those of you who had some kind of side effect, did it all work out? Or am I just being way too paranoid about this? Have any of you had very successful surgeries and been able to raise kids afterwards?
Thanks!
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Old 03-27-2017, 03:09 PM
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Quote :
What I'm really wanting to know is, how many of you out there were able to be parents after surgery? I mean, especially those of you who had some kind of side effect, did it all work out? Or am I just being way too paranoid about this? Have any of you had very successful surgeries and been able to raise kids afterwards?
It's a great question edepew151. I can't help you myself, but I'm sure others will weigh in. I assume you're asking about some sort of lobectomy, rather than an implant like the VNS?

The link below will take you to some CWE threads about surgery that may be of interest:
http://www.coping-with-epilepsy.com/...n+surgery.html
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Old 03-27-2017, 03:32 PM
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Yes, I am referring specifically to those who have had a brain surgery. I have actually already had a VNS implant about 6 years ago, and it failed to do anything for me except make my voice sound like I smoked 30 packs a day! My doctor turned it off after trying several settings over a year and a half.
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Old 09-11-2017, 09:25 PM
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I have actually had surgery, and it has now been almost 4x length of time without seizure as it had been before... I was having bad tonic-clonic apparently (I've seen one clip of video of one of mine)... it has been a bizarre reality check for me in ways though actually - paranoia in ways (because I was never "there" for my seizures, for retrospection and recollection) - but it takes some kind of realization, which feels to be incoming, but slowly... in ways it's "great", but also kind of bizarre - like "why the hell did *I* have part of my brain taken out??" which can induce bizarre panic and reality-checks for me, but there is a motion toward a healing I figure... there's that bizarre question about wth is going on though... I hate admitting it, but hopefully you have a belief in your seizures... try to get one on video taken by a loved one or whoever. BELIEVE your doctors though. But it HAS been hard for me to grasp because in was it has been very hard to really grasp my seizures because they were weeks apart, and so there was a tricky belief in them.
I'd posted a couple surgery photos here, but if you'd like to see a bunch of them I'd be loving to show you. My scar still seems a bit bizarre to me, but it is a grasping process. (Also to mention, my left ear lowered down about a half inch from the surgery too, which is still an ongoing mindf**k - as well because I wear glasses too which end up wonky, and lowering the ear bar would just look weird IMHO... sooo anyway...)
Actually getting back onto this site has started to be some relief for me...
Feel free to message me, to ask for photos, yadda! <3
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