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

[brain]

It's final!

I'm booked for "CC" in November 18th, so
it's "Hello Cleveland Clinic" - while I won't
be in the Hospital on the first visit yet ...
my Primary had given the orders after all
the test results have come in ...

So yes, it's down in Weston, Florida (and
Wendy was right - applause) and I'm so
happy it's not in Cleveland, O-HI-Ya!
BRRRRRRRRRR!

fft:

My Primary will be sending everything over
there before I get there; and I will have to
take the bus ---> unfortunately, here's the
WORSE PART, they do not provide transpor-
tation to or from their Hospital at that location
down there so this means I will have to take
my Trek Touring/Racing Bicycle with me, in
spite of my condition and I have absolutely
no idea how far of a distance I will have to
cycle to get there by 2 PM!

::: sobs :::

And even AFTER the 1st consultation visit,
I will then have to cycle all the way back to
the Bus Station to be transported all the way
back home - and it's going to be one HECK of
a very long TRIP for me alone!

Rain and Cold - OR - Warm and Sunny; what-
ever the weather is, that I will have to endure
it - and that will be the scary part.

I found this to be very odd, because Cleveland
Clinic had informed my son when they called us
(yes, they called us first, and later I responded
via email on website) - that they had transportation
pick up services at their Hospital locations all over;
so I am a little confused. ???

(Am I missing something here, even I had read on
their website in various places in "CC" about this,
so I must be lost ...)

In one way I'm nervous as heck and another way
I'm looking forward to it because I'm so "up to here"
with these decades of epileptic seizures.

While at least this is a progress move forward, my
Primary has seen enough and has enough evidence
and "proof in the pudding" there. Agrees with me,
"Enough is enough!" He is very familiar with Cleveland
Clinic and isn't too happy with what all had been
going on here (the way I've been treated here, and
to the fact, he knows all the whole story right up
front then and there).

So whatever ... it's Hello "CC"! And the greatest thing
is, they have me assigned to a Women's Level 4
expert, who deals with Women's Issues ... in Epilepsy,
because when I was asked about the diagnostic codes
from the past and present, I provided it, even providing
the little background info. Even better yet, they're providing
an Interpreter, in case if I do not understand the Doctor
(I can lip read some people and some people I just
cannot, and some - are "so and so").

This will really be very interesting and a progress forward!

 

[brain]

Cleveland Clinic - Florida

 

[sixpack]

good for you:clap:

my brother-in-law works as a shrink for Cleveland Clinic. He is, however, in Cleveland.

I hope you get all the curative answers you seek.:yippee:

 

[Kansas Educator]

That's great news and reason for lots of hope! If I were you, I would try calling CC and ask if they have a medical social worker. She/he might be able to tell you what the deal is with the transportation and help you if it's possible.

 

[brain]

That's great news and reason for lots of hope! If I were you, I would try calling CC and ask if they have a medical social worker. She/he might be able to tell you what the deal is with the transportation and help you if it's possible.

I already spoken with "CC", they don't have that available,
as I had posted, not at that location. But I have time to
figure something out or work something out somehow.

I'm a former AAU/Semi-Pro Cyclist, you can see my pic in
the Head Storms Resource link below if you clicked on it,
but it's still a high risk, I even told them that - but maybe
my Primary can vouch in, I just don't know quite yet, we
still have time.

 

[Kansas Educator]

The main thing is that you're going -- the rest will work itself out!

 

[brain]

Almost set - about time to get ready to go!

Greyhound is all straightened out,
won't be heading to Miami, but instead
to Ft. Lauderdale - about 20 miles from
Cleveland Clinic in Weston, FL.

So things are slowly falling in place, and
I'm getting ready, and thanks to EFA
and Triple A on getting the ball rolling.
And Cleveland Clinic has also been now
working with me as well ... geesh!

I nearly had to go to Miami dressed like
Rambo with a Bazooka in my hands! Triple
A didn't like what they saw (I know Miami
exceptionally well, having owned terminals
down there in the past, once I finally learned
of where the terminal was, my heart fell to
the soles of my feet with a *THUD*! I thought
this was a sick-joke!) and were excessively
concerned about my safety, and had no doubts
about my comment about being dressed up as
Rambo armed with a Bazooka down there.
(I even was telling my mom all the bad, bad
neighborhoods down there and the fellow there
even acknowledged it. It's really sickening when
you think about it!)

My Primary's getting all the records going
so it would all be gone out and over there
before I get there.

I will be bringing my wireless laptop with
me, since I'm deaf, I'll be using it to
communicate to my son and his girl at
my home (here) and to my sister who
will relay the message to my mom, even
though her boyfriend will probably get
the messages before she will - and relay
it to both of them, which is absolutely
fine.

There's still some stuff that needs to be
fine-tuned, then things will be all set and
good as go. Still need to make a couple
phone calls - but other than that, pretty
much everything is being in place.

I will be traveling lightly, using my Trek
bicycle backpack, however, I'm curious if
Cleveland Clinic has a T-Shirt that says:

"I went to Cleveland Clinic and all I got was
this lousy T-Shirt..."



I used to have a whole bunch of those T-Shirts
from all over the place ~ and I still think they're
hilarious ....

Heck - I think CWE should have:

I've visited www.coping-with-epilepsy.com and
all I got was this lousy T-Shirt!

:roflmao:

 

[Nancy]

Wonderful!! Dear FRIEND, you know I'm holding you tight in my hopes and prayers.
NOV. 18 !!!!!!
I can't wait.

 

[Nancy]

But, know something? I'm still a bit peeved with you for posting that MEAN neuropsych IQ test thing ......
I HATE those things .... I've had MORE than my share of them...... just THINKING about them makes my stomach quake.........
ooooooooooooooooohhhhhhhhhhhhhhhhhh I have a headache

 

[sixpack]

my daughter took a couple of questions to school today. One teacher was quick, the other was pokey about it.

 

[brain]

But, know something? I'm still a bit peeved with you for posting that MEAN neuropsych IQ test thing ......
I HATE those things .... I've had MORE than my share of them...... just THINKING about them makes my stomach quake.........
ooooooooooooooooohhhhhhhhhhhhhhhhhh I have a headache

:roflmao:

Do YOU positively sincerely honestly believe
I absolutely adore them?

NOT!

 

[brain]

my daughter took a couple of questions to school today. One teacher was quick, the other was pokey about it.

ROFL!

Which questions were they?
I'm curious!

:huh:

 

[sixpack]

ROFL!

Which questions were they?
I'm curious!

:huh:

She took the one about happiness and senipah; and the Tim's grandfather's son. She got index cards and wrote the questions on one side and the answers on the other. She even put artsy pictures on them. My daughter is nothing if she isn't neat and artsy:roflmao:

I remember looking at the happiness one and going WHAT???. My daughter walked by and had the same reaction. Then I looked at the words and all became clear.

 

[seizures4ever]

Sharon,

I'm so happy to hear about you going to the CC! :e::agree: Although, the transportation issue sounds like a pain in the butt.

O.k., I don't know what rock I've been under, but I do have a question. Are you going to see an epileptologist about surgery or for the surgery itself?

I'm completely in the dark (and I thought I read most posts pertaining to important issues)!?! onder:

So please, enlighten my poor memory-fogged brain.

-Julie

 

[Cint]

Sharon,


O.k., I don't know what rock I've been under, but I do have a question. Are you going to see an epileptologist about surgery or for the surgery itself?


So please, enlighten my poor memory-fogged brain.

-Julie

:agree: with Julie. I also thought you were already under the care of an epileptologist after all these years of suffering from seizures?! onder:

Please forgive my forgetfulness.

Cindy

 

[brain]

What can "CC" do for me?

Ok, I was supposed to have brain surgery in
80s, but the HMO deemed me as "too young
and felt that I would outgrow it" (I was a young
married woman) - even though my Brain Surgeon
appealed to it alongside with the Epilepsy Foundation's
Regional Director - they lost.

Then come early 90s, same Surgeon, more advanced
equipment, and more tests, making the case even
stronger and more solid - went up against a different
HMO (we had a different HMO this time ago) - and HE
LOST! That HMO blamed the 1988 MVA and declined
it even though he had all the proof in the world that
I had a long standing case file before them.

He went no where and threw in the towel, he was
retiring - but warned me he only could forsee trouble
in the future for something he could easily fix and
possibility eliminate or reduce the problem. (How I
wished now HE WAS WRONG!)

Then come in late 2006 - brain surgery again back
in picture but it all fell apart, everything was full blown,
but it's not known exactly why everyone backed off;
my Primary has everything and I'm aware of where all
the problems are. Everything from EEG's to Scans
(including expensive Scans) are all abnormal. I have
everything from abnormalities, subclinicals, clinicals,
and so on - but then again I've had them all in my life
anyway (had my 1st EEG in 1969). It's rare for me to
ever get normal EEG's.

So I had no where to go - but because I also have
cardiac problem, that's confirmed, but my Primary wanted
to check (run tests) to make sure all the bases were
covered first and to make sure nothing was overlooked.
All signs are pointing to Neurological & Epilepsy.

The Level 4 Neurologist, she is a specialist in Women's
Issues (AWESOME!) and she will be first evaluating
everything. My Primary (a former long time Professor
and Intern Instructor) is working on my huge medical
record, which goes back since I was born - is putting
everything together and shipping it off to "CC". I had
been to Shands in 1966 and was already Dx'd back
then (I was born in 1962).... so it's been a life long
"hell on earth" for me.

It's become so asinine! I don't want to go into details
into specifics, but I did see 2 Epileptologists ....

While I do have the "Main Doctors" - I do have their
Partners, Surgeons, Nurses, and other Staff - which
are all part of the team. Bernard and Birdbomb knows
about the details on this and I'd rather leave it there,
since this is in the past. They know about what all had
happened, and it's very bewildering!

However, I'm spiraling downhill and fast, and seizures
are out of control and there's a lot more to it; my
Doctors here knows all about what all is going on.

Nonetheless, my Primary (the "Head Honcho") is the
main man - *laughing* - is the one who's been in
rapport with them. I cannot speak too much on this
issue here, for once I arrive there - the Neurologist
will then be going over everything and provide the
consultation and evaluation.

1) I do not know if they will be admitting me in or
I will be heading back home after she speaks with me.

2) But they will have to plan everything out and go on
from there, so most likely I will be returning back to
"CC" - I don't even know if I will have a surgery, or
if it's too late, or what they will do from that stand
point.

3) She could be changing my medication or put me back
up the right titration, or do a lot of things, I just do not
know. I'm not "Miss Cleo".

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

I've already had so much preliminary work-up for brain
surgery, had a Wada in 1989 (strangely all I can remember
is they gave me the report that I was neither right nor
left side denominate - while that Hospital doesn't have all
my records, charts, etc - but it's documented in my
Insurance Profile) - but I also had a "half-done" Wada in
2006 - and they came up with the conclusion of that I was
right side denominate, and my seizures are on the right side
and I'm "southie" (my nickname, because I'm a lefty, south-
paw, southerner - have nothing to do with Boston), and it
was of concern. But when that Epileptologist at that time
reviewed this over with me, only then when I asked how
did everything jump from the left side to the right side?
While he argued it was always on the right, and I said "NO",
he agreed to wait for me to bring in the EEG reports - and
upon doing so, I would have to imply the best description
of his reaction was he wasn't prepared for all of these
bizarre EEG reports! Left, right, occipital, frontotemporal
region, etc - I could put the emphasis that the "feeling of
being overwhelmed" would be the best description of his
emotions when he was reading through the piles of reports,
through different years, throughout the decades.

He did pull out a few, just for "samples" - like one Neurologist
who did a lot of my EEG runs (but never was my Neurologist)
who nicknamed me "Scatter-brained" for obvious reasons,
it was self-explanatory.

But I must also add that while I have no memory of this,
but I did have several seizures in front of him, with the 1st
time which scared him - went status that generalized and
it continued in the Hospital ER, and the EEG he ordered up,
proved it, in turn, the video EEG was ordered up and he was
quick to put me back on AEDS! He admitted I was scary!

Then there was another time but I don't have any memory
except for what his Nurse informed me, but later he told
me it was bizarre! While it was but for a short time, but I
was back to normal, it freaked him out.

For some reasons - for decades, I seem to have the
tendency (saving a few good ones who were experts
and/or had excessive knowledge of seizures / Epilepsy)
of scaring Neurologists but I never understood why.
They just kept putting me on all these "anti-convulsants"
(known now as AEDS) - and yet when it failed or
didn't work, always reverted back to Dilantin (Phenytoin)
or Dilantin with Klonopin at bedtime.

I have always suffered from seizures all in my life since
a wee one, kept isolated from others, and it goes on
and on from there. So I understand the Stigma of
everything imposed upon Women.

I've been through it all - I've been slammed and labeled
as anything from "It's all in your head" to "Psychiatric"
(even though it's all on the EEG's and Scans) and was
even told by one that "females don't get these..."?
There wasn't anything or anyone for me to turn to (the
area was rural); and there wasn't anyone I knew that
had Epilepsy or Seizures when I grew up, and heck,
it was lonely as lonely can be. While primarily the main
problem were nocturnal, daytime events were isolated
and sporadic. Now that I'm older since beginning mid
90s, it's progressively grown worse.

Just as Shands stated in 1966 and finalized it in 70s,
progressive neurological - nerve damage, epilepsy,
audiology - hearing loss, all unknown - mitochondrial,
later, progressive cardiology was added. That's just
a brief overview. I'm a "mito-baby" as what the
Physicians nicknamed me when I was young, and I
hated that slang, I prefer to deem myself as birth
defects - for some of my birth defects were corrected
via surgery, some have not been; some could have been
corrected but never had.

But all I know is what my Pediatrician told me that in
my case, the end result would eventually could lead to
death, depending on the progression of this mitochondrial,
if ever it accelerates, it will decline and everything else will
go downhill from there.

It's scary - because what Shands had predicted had been
bulls-eye (except for my life-span, I've exceeded it), that
specific acceleration did happen, and how does a Medical
Doctor / Surgeon stop it or at least slow it down? It's
leading its onward path of its destruction. I've declined
Hospice back in 2005, and I've been fighting since, but it
drains me out.

Spiritually, I may be strong, physically - its taken a toll,
and they (Doctors) can see it, everything is in a dire mess.

So what can Cleveland Clinic do?

I will only have to wait and see ....

 

[seizures4ever]

Thank you for sharing Sharon. I wish you nothing but the best at CC. :e:

I know the feeling of being strong in spirit, but weak in body. I also have multiple health problems...all progressively getting worse. I am barely in my thirties but feel 80 physically. The seizures continue on and on nonstop.
At the prompting of several doctors and my family, I (very reluctantly) recently went on SS disability.

I have, like you must also have, a "fighting spirit" to survive...so going on disability was both a blessing and a slap in the face (if that makes any sense). onder:

I'll pray that whatever happens at CC is going to work for your benifit and that you will finally "get somewhere" and move forward with this whole process of healing and seizure control.

My love to you deary.
Your friend,
Julie

 

[Bee91]

ooh come visit me!!!


Good luck there brain!!

 

[brain]

Not going to the one in Cleveland, Ohio but ...

ooh come visit me!!!


Good luck there brain!!

I'm going to the

Cleveland Clinic Hospital - Weston, Florida

 

[brain]

My "CC" Level 4 Neurologist ...

This is my Cleveland Clinic Level 4 Neurologist



If you clicked on her image, it will take you to her
page ... and look at the impressive background
that she has and a whole lot more...