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@yahoo.com>
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]
No comments:
Post a Comment