Exciting Tim! I read about Dr. Devinsky in that big Newsweek article on epilepsy about a year and a half ago and hear his name all the time now. he sounds like THE guy to see. I read that they may put sphenoids, or little needles, in my cheeks along with the electrodes on the head? Is that something they did with you? I'm not sure if I will have them, but it sounds strange and uncomfortable! good luck
Wendy
--- On Sat, 12/4/10, TIMOTHY BALDWIN <tbb1@prodigy.net> wrote:
From: TIMOTHY BALDWIN <tbb1@prodigy.net>
Subject: Re: [epilepsy] Re: Ambulatory EEG
To: epilepsy@yahoogroups.com
Date: Saturday, December 4, 2010, 10:00 PM
Wendy,
A 72hr.Ambulatory EEG is on me and working,it was installed at New York Speech
Institute.Which is just a few blocks from NYU's Comprehensive Epilepsy Center.
Dr. Devinsky & Dr.Ray sent me there to get it.It was installed yesterday 12/3 @
2pm,I'll go back on Monday 12/6 and have it removed.I took off
yesterday,Mon.&Tuesday.I'm happy that my 72hrs.are through weekend,I'd recommend
taking advantage of the time off instead instead of taking off work while its
on.Last night I felt some itching on head so don't scratch near it.That could
make it lot more of a problem.Since then I don't even notice it to be pain,today
and it'll probably won' be worth a scratch.I'm not to&won't wash hair till after
it's off of me.I can't wait to find out if I'm having seizures that I know
nothing of.They may be at sleep or very quick, maybe just two seconds or a
fraction of one.Cause,I only can tell of my seizure frequency of those that I
know of.
Tim Baldwin
________________________________
From: wendy d <wdeb5@yahoo.com>
To: epilepsy@yahoogroups.com
Sent: Fri, December 3, 2010 2:42:58 PM
Subject: Re: [epilepsy] Re: Ambulatory EEG
Thanks so much, Jamie!
What if I stayed up late or had a beer the night before so that I would have
more seizures during the EEG? All safety issues aside, I'd like to make sure I
have seizures so that the procedure won't have been for nothing. On the other
hand, I don't want to mess up any results. Thoughts?
Wendy
--- On Mon, 11/22/10, Jamie <cnmjmaloney@yahoo.com> wrote:
From: Jamie <cnmjmaloney@yahoo.com>
Subject: [epilepsy] Re: Ambulatory EEG
To: epilepsy@yahoogroups.com
Date: Monday, November 22, 2010, 11:28 AM
Wendy,
Oh I am so glad for you Wendy!!
Yes she was quite the tropper. The last few days she was so depressed though.
I hope you get some helpful news :)
Take care,
Jamie (Megan's mom age 9)
--- In epilepsy@yahoogroups.com, wendy d <wdeb5@...> wrote:
>
> Thanks, Jamie! I checked with my insurance as you suggested - they should cover
>
> 90% of my 24 hour ambulatory EEG. What a patient daughter you must have to be
> video taped and all hooked up for 6 days.
>
> Wendy
>
>
>
>
>
> ________________________________
> From: Jamie <cnmjmaloney@...>
> To: epilepsy@yahoogroups.com
> Sent: Tue, November 16, 2010 8:32:02 PM
> Subject: [epilepsy] Re: Ambulatory EEG
>
>
> Wendy, I don't know what kind of insurance you have.....you might want to find
> out what your cost would be. Me then 8 year-old had a 6 day one and our cost
>was
>
> almost 2K. We have a PPO. We video taped her while she slep too and he said
> that was VERY helpful. I pushed the button when I thought I saw one. The Dr
> watched the video and confirmed 6 seizures but the EEG showed no sign. SHe
> something to be aware of. Pros and COns to both. My daughters dr is always
> wanted to give her more tests but we have said no at least twice to more EEGS.
> Good Luck :) I hope you get answers to your questions.
>
> Sincerly,
> Jamie (Megan's mom age 9)
>
> --- In epilepsy@yahoogroups.com, wendy d <wdeb5@> wrote:
> >
> > Thanks, Elizabeth, Millie and Tim. I've emailed the doctor to see what she
> >wants
> >
> > to do, and I think it is definitely worth a shot. I will let you know what
> > happens!
> >
> > Wendy
> >
> >
> >
> >
> >
> > ________________________________
> > From: TIMOTHY BALDWIN <tbb1@>
> > To: epilepsy@yahoogroups.com
> > Sent: Mon, November 15, 2010 9:35:50 AM
> > Subject: Re: [epilepsy] Ambulatory EEG
> >
> >
> > Wendy,
> > Don't miss out,it could show some seizures that you don't have any idea
> >of.After
> >
> >
> > its over you'll probably be asked;How many seizures did you have while being
> > recorded?You might say four,sixteen or none.The doctor will look at records
>and
>
> >
> > find out see how many epileptic seizures you had.If you told him four or
> >another
> >
> >
> > amount,but none are found.He might decide that they were probably weren't due
>
> >to
> >
> >
> > epilepsy.If you said none,and he finds that you had some could've been very
> > quick or all happened while sleeping.It's very important to know of the fact
> > that you could be having more than you know of.Say if you were driving and
>had
>
> >a
> >
> >
> > very quick seizure happened in .3 of a second,and only caused you to blink
>your
>
> >
> > eyes shut,while in or about to make a turn as the road does,it's likely you
> > might go straight into a tree without turning.If in a turn you could not
> > continue to turn and run off the road or crash into a car next to you.It only
>
> > takes a tenth of a second to cause you to crash and wonder what caused
>this.If
>
>
> > some epileptic seizures are long enough for many to notice,maybe you could've
>
> > been sitting down,w/o a witness to tell you of having one.
> > Tim Baldwin
> >
> > ________________________________
> > From: wendy d <wdeb5@>
> > To: epilepsy@yahoogroups.com
> > Sent: Sun, November 14, 2010 4:48:29 PM
> > Subject: [epilepsy] Ambulatory EEG
> >
> >
> > Hello,
> >
> > My simple partial seizures are changing a little bit, and my doctor suggested
>
> >an
> >
> >
> >
> > ambulatory (at home) EEG for 24-48 hours to try to find out which area of the
>
> > brain is affected. During this outpatient procedure, I am told I will press
>the
>
> >
> > "event" button when I feel a seizure. I believe I have had seizures during
> > previous EEGs that did not show up. The large majority of my EEGs, including
> > overnights, are completely normal. Would there be any benefit to doing the
> > ambulatory EEG is my seizures may not show up on the recording? I'd guess
>there
>
> >
> > is a chance something might show up if I am having more intense seizures, but
>
> > there is also a high probability that nothing will show up at all. Could
>there
>
>
> > be a chance that something will show up even when it hasn't before, or should
>I
>
> >
> > just skip it? Thanks!!
> >
> > Wendy
> >
> > [Non-text portions of this message have been removed]
> >
> > [Non-text portions of this message have been removed]
> >
> >
> >
> >
> >
> >
> >
> > [Non-text portions of this message have been removed]
> >
>
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>
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