Hello Cleveland Clinic! Back from CCF - Photos Are Up!

[brain]

So glad you're feeling good

1) my butt is sore and legs are cramped from the long ride
TO Weston, Florida

2) my butt is sore and legs are cramped from sitting and
waiting in the busy and crowded CCF (as they call it at
Cleveland Clinic Florida)

3) my butt is sore and legs are cramped from the long ride
heading home FROM Weston, Florida



General Rule of Thumb ...

Don't let your mother sit on the aisle seat, you don't get
to move as much!



But at least I was able to move over to across from her
and snatch up 2 seats when the bus wasn't crowded but
still - was sore and cramped.

Well, let's see how Lamictal works added to the feedbag,
my Zonegran, Clonzepam, Folic Acid remains unchanged;
I'm pure intractable - since my med records were there
before I arrived, they could read me like a book literally.

My Seizure History has been corrected in my "About Me"
on my Profile. The Doctor went over everything but first
she asked me if I knew what my Epilepsies were, I could
only remember some but not all, I did leave a few out,
and she filled them in - then she wanted to know if I
knew what they stood for? Some I knew, others I didn't;
she explained it all out.

So basically - I am NOT a surgical candidate, period!
But she did elaborate on why they cannot do surgery on it,
because you cannot remove this and this and that and that
and that, it won't work. Medications is the only option for me.

What made this even more interesting was the question of
this (not the Simple Partials - but rather the major seizures,
the ones I do not have memory of) ... "What happens to you
when you go through a seizure?"

NOW SHE had me at a point-blank! (NOW how am I supposed
to answer that question when I have absolutely no memory of
such? At first, I thought this was some type of a trick question!)
But she rephrased the question again - and my mind just went
blank. I answered "I don't know but "they say" ..." and she stop-
ped me right there on the tracks!

Very quick to ask me if I had to rely on everyone to tell me
what had happened - I had to confirm that, then she wanted
to know what "they say", well, I told her what "they say" ....
then before I could even finish what "they say" - my mom chimed
in, after listening to some of the things I said ...

I just found out I had a seizure after an hour or so during my
sleep and she was awake, reading a book, and she saw it all,
even remarked that I nearly fell off the bed. Jerking and all,
but when the Doctor questioned my mother - like how long
was she asleep? How long did it last? etc ... It just confirmed
everything to the Doctor - no doubt about it at all.

I had to comment to her that I suffer from nocturnal for years,
that the Neurologists I had tried to control that, but I didn't
have day time seizures, as those were very rare and isolated
occurrences, but when I grew older, they began to pop up and
now it's become both day and night, and many times I am not
aware of it - but people tell me I seize more than I realize it,
but I have my doubts. She was actually smiling at me...


Yes, I am glad I went to CCF - but in a way I am disappointed
because they won't be able to do anything for this type of
Epilepsies, but I still have medications available that I can
go through ...

So here comes the honeymoon phase on Lammy ... well
I won't say it!

[brain]

Should I have my User ID changed to
"Scatter-brained" or "Malfunction Junction"?

[Birdbomb]

Glad you made it back safely, it was prety dull around here.
So, it's the Ato Z list of epilepsies. WOW~!

[drarvindr]

Fellow scatter-brain - i salute you ! Good to have you back

[Kansas Educator]

So glad you're back safe and sound and in one piece (other than your brain that is!). It sounds like you did get some answers even though they may not have been the ones you were hoping for. Still, it sounds like the CC doc really knew her stuff and at least gave you definitive information. We'll just keep hoping and praying that the new drug will improve things a LOT!

[Bernard]

... Medications is the only option for me. ...

I really wish you had an opportunity to try the LENS system.

Should I have my User ID changed to
"Scatter-brained" or "Malfunction Junction"?

Hmmm...

[ziggidypoo]

Missed ya!! (((((((((("scatter-brain)))))))) Yeah, but, if you go by that name, you'd have to fix your pic- at least not a "splatter-brain" - that's what a fly on the windshield has............ooooooooooooooo.........baaaaaad!!

[Cint]

So basically - I am NOT a surgical candidate, period! Just
like the Neurologist who performed a lot of my EEG runs
decades ago for many years (but never was my Neurologist)
had stated, I would never have a brain surgery because my
seizures are not confined to one location. He had nicknamed
me "Scatterbrained" for a reason, so as the above implies,
as you can see - they come from everywhere in my head.

However in addition to the Epilepsies above, she did put
emphasis on to the fact that I would have all types of seizures
because of the various areas of my brain that is affected. She
wanted my mother to understand this. However, I did put my
own "troubling perspective" of the fact of all those listings just
on one individual? That cannot be possible, but she said it was,
and there's various reasons why, but she wouldn't elaborate
specifically why.

I had to comment to her that I suffer from nocturnal for years,
that the Neurologists I had tried to control that, but I didn't
have day time seizures, as those were very rare and isolated
occurrences, but when I grew older, they began to pop up and
now it's become both day and night, and many times I am not
aware of it - but people tell me I seize more than I realize it,
but I have my doubts. She was actually smiling at me...


Yes, I am glad I went to CCF - but in a way I am disappointed
because they won't be able to do anything for this type of
Epilepsies, but I still have medications available that I can
go through ... (she laughed at some of the nicknames / slangs
- like Topamax - when I remarked, Dopey-Max, which I never
had been on it - and she feels that Lamictal will work with
what I'm on considering Zonegran I've tolerated it so well
without any side effects - and when I uttered the slang for
it, my mom bopped me, and she just remarked it can be
for some people. But she feels that the only thing I have to
watch for is the rash, but she doesn't believe I'll have any
problems with this one and it should work.)

So here comes the honeymoon phase on Lammy ... well
I won't say it!

I had a LTL back in 1990, and to this day I wish I had never had it done! So, I would consider it a blessing that you're NOT a candidate for brain surgery. The neurosurgeon said I wasn't a candidate for a 2nd surgery because the real damage was deep in the brain and i would come out with NO memory at all. Sometimes the consequences of brain surgery are worse than dealing with seizures. For me, the seizures came back worse after surgery than when I went in, not to mention the depression & memory loss.
Before the lobectomy, I had complex partial seizures only during the day, but after brain surgery, they became complex partial/tonic/clonic day & NIGHT!

Here is my list of drugs I've tried/am currently taking: Phenobarbitol, Tegretol, Dilantin, Felbatol, Lamictal, Neurontin, Topomax (or Dope(a)max), Sabril, Trileptal, Keppra. Nothing works totally for me, either! But I told my epileptologist I'm not going to be a guinea pig any more. I've been through enough probing and prodding on this body from top to bottom (literally) . I still have to take 2 meds along with the having the VNS programmed at a high setting. Are you a candidate for the VNS?

I am glad you're pleased with your visit to the Cleveland Clinic. Good luck with the Lammy!

Cindy

[brain]

Gail:

LOL @ "Splatter-Brain"




Bernard:

What's with the Hmmm

(I was just being sarcastic!)


Cindy:
I am not a candidate for surgery, this includes VNS
unfortunately. But she did cover the bases on the
anti-epileptic drugs I had been on, and go over
the anti-epileptic drugs I had not yet been on. That's the only
thing I can be on, I'm pure-intractable.


Doc & KE - It's great to be back home!




===============

I did get the photos, will be scanning them into the
album - but I am telling you, CCF (Cleveland Clinic
Florida) is HUGE! I had to keep backing up, backing
up, and backing up, just to get the Hospital in the
photo! And only to find out on the other side, the
Clinic (which is attached to the building) is connected
and I didn't know that! We went through the double
doors ...

One thing about CCF has is ....
Starbucks and Morrisons!
So you can guess where I hit up on!



=====================

I'm in my "honeymoon" right now on Lamictal,
so Pill #1 ... then will have my level check in 1
month. I already was at my Primary's office to
drop off the papers for him and unfortunately,
being so tired I was by accident I left my bike
lock, house key, and security alarm there; but
it was a good thing because my Primary wanted
to know how it all went at CCF ...

But what was so funny was, his reaction after
when I had told him that they just confirmed I
had Epilepsy since birth and his remark was
"OH DUH!" (He already knew that) But he will be
awaiting for their letter. And he's glad I went, and
will be working with them and touching bases with
them and see what can be done.

His reaction was much like "Drew Carey" - *laughing*.
But he's happy I went, however, I do have to send
more medical records down there to CCF, as she
wants more.

I am really tired, for I had to ride my Trek down to get
my meds after stopping at my Primary's Office; only to
have to go back to his Office again - because I left my
keys there! (OOPS)

Can anyone send me dinner? I'm hungry and too tired
to cook anything ...

I want room service!

[brain]

Bernard:

I saw that!




Super Moderator - Malfunction Junction

[Bernard]

Bernard:

What's with the Hmmm

Bernard:

I saw that!

[brain]

I got even!



CWE now has ...

Welcome to the all new ...

MALFUNCTION JUNCTION

Right here in CWE!

Everyone can join - click on the link and
have a ball! It's easy and it's fun! Let's
start a streak rolling!

[Birdbomb]

Mr. B can be a cheeky bastard! He likes to give good "toast and eggs"

ie; Super Moderator - Malfunction Junction
Super Moderator - VNS Guru

That's alright though, I gave him a good one on my site...."Johnny Neurofeedbackseed"

[stilldancing_98]

HMMMMMMM" tHINGS THAT MAKE YOU FEEL GOOD.LOL I'm glad you are doing better now Brain.

[brain]

LOL @ Birdy! Yup you are absolutely
right about that one!

Johnny Neurofeedbackseed!

We need to have that one on him
instead of "HOST"

:::: Hrrrrrrrmphhhh ::::


PS: Meetz and I are busy over at
the Malfunction Junction - LOL!


Thanks Terese!



C'mon and join Meetz and I over there!

[stilldancing_98]

I'm comin I'm comin

[brain]

I'm comin I'm comin

Where you going? Are you bringing the
Cheesecake? Pizza? Pepsi? Snickerdoodles?

[stilldancing_98]

Oh man that sounds good.things that make ya feel good. lol.I'm going to bed. I'm pooped.

[brain]

Cleveland Clinic Florida - aka CCF: Weston, Florida

Enjoy it, but I still have my eyes on
that golf cart!



Huh? You say? Golf Cart? What's so
special about golf carts - just wait until
you see it ... then you'll want one of
those too!

[brain]

Here's a photobucket slide show if those
who would like to view it in this manner:

CCF - as a slideshow