Level 4 Epilepsy Center - What to Expect?

[southie]

I've had Neurological problems since the day I was born and the Hospital (where I was born) began treating me in 1963, and didn't really press on until 1966, when Shands Hospital (Gainesville) laid out the "foundation" (plan). For generations I have spent more time under the sun than I care to know, and I've seen the progression and changes in the Neurology Department as well as the Other Departments ~ as well as the decline of the genetic/inherited Neurological problem I have (I'm adopted).

It has gotten to a point that I've progressed from a Regular Neurologist to a Level 2, Level 3 ... and now they're pushing me into a Level 4 Epilepsy Center.

My Concern Lies Here:
My Problem isn't all Epilepsy - Epilepsy is a small part of the problem but not all of it. While I've spoken with the Level 4 Center they've assured me that they deal with other Neurological Disorders, but they do not answer all my questions.

I do have a conference shortly with my Doctors about heading this direction.
I'm not exactly "thrilled" - about heading this direction.

What can I expect from a LEVEL 4 CENTER?

Anyone ever been to a LEVEL 4 CENTER?

[theoneRogue420]

I can be of no use to you, Southie... I am only recently diagnosed.

I just wanted to send you good luck and best wishes. I would hope that the higher level you go to, the better the Dr.s and the info they have to share.:)

[Ellie]

I don't even know what that is. :( I hope someone chimes in to give you information and educate me!

Hope you're doing well, Southie. I've been busy as heck. My pre-op is today and I have surgery next week (not brain related) so I'll be MIA for a while, too. Make sure you update this when you find anything out!

:hug:

[Porkette]

Hi southie,
I've been to an Epilepsy Center many times but I've never heard of a Level 4 Epilepsy Center. I can tell you at a Epilepsy Center there are neuros. , epi's, neurosurgeon, and neuropsych. working together as a team to help people with e. Since going to an epilepsy Center I take fewer AED's, I've had 2 brain surgeries to help reduce my sz. , and I've seen a neuropsych for testing to pinpoint the exact locations on my brain causing sz, what caused my sz., and also to check my short term memory. All of these Drs. I've seen are specializing in epilepsy only and they are way ahead of any neuros. I ever saw in 30 yrs. Here's wishing you well and May God Bless You!

Sue

[southie]

Level 4 Epi Care Center (http://epicareflorida.com/)

This is where I will be heading to, after I have my Oral Surgery
done, I will meet the Epi next week, he already knows what
all is going on and is aware of the upcoming Oral Surgery (it
has to be done), then once I recover from that and heal, then
*BOOM* - I'm going to be in the Level 4.

Level 4 is the highest you can go in the Neurology. (There is no
"higher" level than level 4 in the Neurology field)

I was hoping someone who's been there would give me some
idea of what it's like, and share their experience, the highest
I've ever gone was Level 3.

But I can see that no one's gone that high ... Thanks anyway!

((((((( hugs )))))))

:(

------------------------------------

ELLIE: ((((( Prayers for you and hope you feel better soon! )))))

[southie]

National Association of Epilepsy Centers - LEVEL 3/4 Center Map (http://www.naec-epilepsy.org/centers/centers.html)

Just click on your State (not all States have
Level 3/4 Available) or the one closest to you.
And the list will appear of all LEVEL 3/4 Epilepsy Centers

The National Association of Epilepsy Center is extremely
strict and rigid in their guidelines, and are associated with
the American Epilepsy Society & Epilepsy Foundation.

PS: Can this be moved to the information section?

[Bernard]

Hi Southie, I think you are focusing on the "level 4" distinction too much. It's just another medical facility with doctors. It just so happens that this facility has specialist doctors and equipment to treat the most intractable cases.

I'd expect your visit to be no different from any other medical facility with doctors. You will show up, wait a while, see a doctor, have tests done, wait some more, wait some more, wait some more, see the doctor again and get some feedback on the results and then make a plan on how to move forward with treatment.

[Porkette]

Hi Southie,
I read the info. you posted regarding a Level 4 Epilepsy Center and found that the one I was at was listed. They never told me it was a Level 4 Epilepsy Center they just called it an Epilepsy Center.
I find it strange that the Drs. can't answer your questions. I've never had any problems with the Drs. answering any of my questions and they have always given me good detail.
You might want to ask your Dr. to do detailed tests like I had done, veeg, wada test, neuropsych testing, visusal field tests, spect scan, and pet scan. I was amazed at the detail all these tests showed. What really surprised me was how the wada test was able to tell the exact cause of my sz. and why they happen. For yrs. we were told it was from lack of oxygen at birth but the wada test showed that it happened before I was born and my Grandfather passed away this caused great trauma to my mom which in turn made to many brain cells go to the right side of the brain causing a scar on the RTL. Take my word it's helpful if you write down any questions you want to ask your Dr. and then just ask one right after another when you see the Dr. and if you don't like being on a lot of med tell your Dr. and they won't load you up with some many AED's. Here's wishing you well and May God Bless You!

Sue

[southie]

Thanks Sue ...

I've already had all those tests performed - had so many that I could probably do them blindfolded by now. As one Doctor already spoken with my son, that "your mother is declining too fast, so we're pushing her from Level 3 to Level 4"

I already had a Wada nearly 20 years ago, and then another one performed last year which got called off half way all because a Nurse gave me medication BEFORE asking authorization from the Epi or Surgeon and BEFORE asking me questions - and I kept falling asleep. I had a lot of Scans done - which shows, and a lot of tests performed. So that's not an issue.

I was supposed to have Brain Surgery in the 80s' but HMO kept denying it, even when the Brain Surgeon, Dr. Donald Graham (retired) kept appealing, he finally got the EFA Chairman, Dr. Robert Vollbracht (who also knew who I was back then) to work with the appeal - and we lost. Dr. Graham, went after it again in 1990 or 1991, with a different HMO and with even more updated conclusive proof to PROVE it was getting worse, and HMO denied it, even with the appeals - I had several Neurologists who supported it all but it went no where.


I often wonder if it would have made any difference if they hadn't denied it back then and it was done - where would I be today?

[Ellie]

PS: Can this be moved to the information section?

I copied it to the Useful Sites Sticky!

[southie]

I went and saw the Epi @ the Level 4 and his Nurse too and some
of the Staff, and they're the greatest! He already had info on me
and the additional info I brought in plus the scans just confirmed
everything so he had the final authority:

Intractable (or Refractory) Complex Partial Epilepsy with Secondary
Generalization :mad:

So already fed the vampires, I mean - had fed the dogs, errr, Labs,
I mean did the Lab work - but never had so much blood drawn on
that day.

Will have upcoming in-office egg rolls, I mean EEG, but I'd rather
have the egg rolls - especially with shrimp in it.

An updated 2007 Meow =(^..^)= Scan I get to PET, or is that a
PET Scan? :D Along with the MRI WOW (What's so WOW about
it?) :eek:

(My HUMOR is bad isn't it? :Ponder:)

The Epi just wants to see the continued progression decline of
it all, since everything else he had was last year's so what I had
brought in was this month's and last months (2007) so he wanted
everything up-to-date.

BUT HE DID NOT touch or change my medications and won't do
anything until all the reports come in and will determine after the
Dental/Oral Surgery - that HAS to be done first.

They really appreciated me bringing in the OLD RECORDS from the
past (from birth, school, and a couple of old medical documents),
so it gave him a whole general perspective.

My Mother's Ledger really helped BIG TIME - especially with all
the specific dates on there, including with Shands Hospital dates,
and details in there - although she didn't record everything, but it
was sufficient. And the School's Info (yeah - my mom saved every
thing *blush*) and the IEP (Individual Education Plans) were also
big help as well, and especially the neuropsych tests and the
fluctuation, the comments, etc - showed them that it existed, it was
there - ALL THE TIME. While they were carbon copies, some of them
were faded, but they did make copies of some of them.

By that time - then he should be able to have a plan and an idea,
and be able to figure something out, he will also be making some
phone calls as well. What's so wonderful about this is two things:
1) Being a native in this area and 2) This hospital is part of the Huge
Hospital System so it's easy to get access to my records/history.

It wasn't bad as I thought it would be, since I had a bad experience
before with Level 4 elsewhere (not Shands - but at another State),
even my interpreter insisted on being at all my appointments, in fact
she was so engrossed by Epilepsy, she actually took all the brochures
when they weren't looking, but one staff caught her, and she was
stuffing her purse with them... and she was asking a lot of questions.
She was actually given some books on Epilepsy - she really was deeply
interested, as she only knew about "Grand Mals / Tonic Clonics" and
"Petit Mals / Absence" - and that was it, and I shocked her in the wait-
ing room when I told her there's tons of it, and the staff was telling her
about it.

YAY for ADVOCACY!