There is a epilepsy chat room 24/7 at my.epilepsy.com if you would ever like to go into that group? Maybe you could make a couple friends in the group? And remember the surgery group online I told you about, it will be tonight and Saturday!
Steve
--- In epilepsy@yahoogroups.com, Merisia Gutierrez <merisia.gutierrez@...> wrote:
>
> Steve,
> the only support here in Portland Oregon that I was able to find meets every
> other month, they talk about general epilepsy concerned I think?? I say this
> because I when to my first meeting a few weeks ago and we only had 3 people show
> up :( not even a cordinator was there
>
> I did felt better just meeting a couple other that had seizures but it would of
> been nice to have more people there...
>
>
>
> ________________________________
> From: Steve <stephenpales@...>
> To: epilepsy@yahoogroups.com
> Sent: Sun, February 20, 2011 7:39:47 PM
> Subject: [epilepsy] Re: going to CA to visit my mom
>
>
> Hi Merisia,
>
> I strongly suggest you get in a chat room concerning epilepsy surgery. I've
> been in the group for 5 years now. The group gets together both Wed. and Sat.
> evening beginning at 7pm eastern time. The group is for people who had surgery,
> people looking into sugery and caregivers also. Its the most supportive group
> I've ever been in. Topics change from subject to subject about anything in
> life. BUT, when the somebody brings up epilepsy surgery, the joking stops and
> everybody talks about their experiences concerning epilepsy and surgery. Its a
> very friendly and supportive besides social group. Its simply a good place to
> be and as you get to know people, you are among people who have been through it
> all in different ways (big smile).
>
>
> On Facebook look up (Epilepsy Surgery Group 1) to find the group
>
> click onto http://epilepsybrainstorms.org/ to find the chat room on the days and
> times I said above.
>
> If I can help in any other way, please post or contact me by email. Take care,
> keep a smile on your face!
>
> Steve
>
> --- In epilepsy@yahoogroups.com, Merisia Gutierrez <merisia.gutierrez@>
> wrote:
> >
> > my concerned is what side affect surgery can bring
> > currently I have one or two seizures a month, I do take 19 pills
> > 3 different medications, my memory is not the best but what if it does get
> >worse
> >
> > after surgery or something goes wrong, or my vision goes....I don't know I
> >guess
> >
> > I'm just scared
> >
> >
> >
> >
> > ________________________________
> > From: Kelly Porter <kellyporter@>
> > To: epilepsy@yahoogroups.com
> > Sent: Sun, February 20, 2011 10:33:32 AM
> > Subject: Re: [epilepsy] going to CA to visit my mom
> >
> >
> > I had my right temporal lobectomy in March of 08'. I understand the
> > pressure you feel like you are under. For me the decision came down to
> > asking my epileptologist this question "Do you beleive this is the only
> > chance i have of being seizure free?" her answer "yes without
> > question". I told her if the surgery could give me one day seizure free
> > I would do it, she told me it would at least give me that. I have no
> > doubt that it is one of the best decisions I have ever made.
> >
> > Some background on me. I was having 10-12 complex partials a day before
> > I was diagnosed, and 3-6 a day even though I was on 3 meds. The Dr.
> > told me I was an "extreme case" and that surgery was my best option.
> > After looking into it my husband and I knew that it was. I am now
> > seizure free most days, and have and average of 1 a week, but they are
> > nowhere near as intense as the ones I use to have. I do have some side
> > effects to the surgery. I lost 14 points in my IQ, I do have short term
> > memory issues, and my concentration is not so good. But, all of that is
> > better then having multiple seizures a day and being, for all intensive
> > purposes, useless! I can't work but I do manage to make the bed every
> > day, and cook for my family most days, neither of these were happening
> > for 2 years before my surgery.
> >
> > If you have nay questions let me know, I stick around here for just that.
> >
> > kelly
> >
> > On 2/19/2011 7:11 PM, happymeri wrote:
> > > I'm getting a little nervous since by this time next week I will be in CA
> >with
> >
> > >my family, and don't get me wrong I love my family but this time I'm going to
> >go
> >
> > >to possibly discussing the possibility of temporal surgery.
> > >
> > > I going to print some basic stuff to have for them but I know that I'm just
> > >going to end up freaking out and just cry just like I do now at home.... My
> > >husband did not want to go with me or correction is not really able to go with
> >
> > >me because money is tight so my youngest son (14 yr) is going along with
> > >me...surgery is not a done deal but more and more it looks like that's they
> >way
> >
> > >I will end up going
> >
> >
> >
> >
> >
> >
> >
> > [Non-text portions of this message have been removed]
> >
>
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>
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