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Lisa

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My VEEG is scheduled for sept 17th. They called me the same day I saw my neuro. I know this sounds terrible, but I hope they see what I have been going through the last couple months. My last veeg was during a 7 month seizure free period, and didnt show a thing. The neuro I was seeing then said he didnt think I was having seizures,but couldnt be sure. That would be great news if weird things didnt happen every now and then. So my neurophsych recomended a different neuro who I really like. He did a sleep deprived and it showed spiking. He also is very knowlegable on brain injury and has helped me alot there. The catch is my veeg is in the hospital of the other neuro. I really dont like this guy. Never listened to a word i said, and always acted like he was too busy. I told him once my hand kept going numb, and he told me that couldnt happen, and it was all in my head. Well my new neuro did a nerve test thingy, and found I had carpal tunnel, and had alot of scar tissue around the nerve in my hand. Im almost tempted to cancel, but I know there is a good chance they will find something, and if they dont find anything I will take that as being seizure free, and stop taking all this brain numbing medicine.
 

Meetz1064

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Ohh,

DON'T stop taking the meds without talking to the doc first. THAT can cause even MORE damage. And you just don't need that. Especially cold turkey.

That said, I can certainly understand your hope for finding something on the VEEG, and the apprehension of where the VEEG's going to take place & why. Is there a way that your doc can get on staff at that hospital? Or is it going to be someone else that will read the EEG?

And the nerve test that the new neuro did, was that an EMG? I have carpal tunnel, too.....in a big way. I have the pleasure of an EMG (electromyelogram) every year, at least once a year....sometimes more. And yes, I quite often lose the feeling in my hands (both of mine), too. It's a bit unnerving....but it CAN be surgically fixed, so keep that in mind, OK?

Take care, we'll be thinking of you......

Meetz
:rock:
 

Bernard

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... if they dont find anything I will take that as being seizure free ...
Unfortunately, if the (x)EEG doesn't record seizure activity, it doesn't mean that you are seizure free - just that you didn't experience one while being tested.

Hopefully the test will yield some helpful information. The (hospital) doc who doesn't listen - sounds like a *very* common refrain. :soap:
 

Lisa

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Even my neuro said they is a good chance we will not capture one because I dont have them very often. So why go through the time and expence? It must me a doctor thing. I dreed even talking to this other dr. Imagine ernie from sesame street complete w/ unibrow, then give him the worst personality ever, and you have this dr. Plus I just found out only parts of the hospital are wifi, so there is a 50/50 chance I wont have access (how will I survive?lol) I know I will go stir crazy. Im not one to be anywhere for very long. Let alone in a room for 2 to 5 days! Can you bring booze?
 
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Nancy

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I *think* the hospital where you have the VEEG will take some steps to cause a seizure, won't it?
The usual steps include reducing your meds, giving you caffine or other food/drink you tell them you might cause sz, not allowing you to sleep, flashing lights, all sorts of stuff.

It sure might be worth the effort to cause and record a sz .... or even to prove one doesn't happen.
I took LOTS of books, cross word puzzles and things like that.
I'll be thinking about you and wishing you well.
 

RobinN

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I *think* the hospital where you have the VEEG will take some steps to cause a seizure, won't it?
The usual steps include reducing your meds, giving you caffine or other food/drink you tell them you might cause sz, not allowing you to sleep, flashing lights, all sorts of stuff.
They did not do this for my daughter. They did not even choose to schedule it during the time of the month that she typically has them.

I think at times they get their minds made up as to what they believe is the cause and can't even be bothered to see the bigger picture.

I believe this is called a "one track mind". Perhaps we can do some studies on this. :ponder:
 

Nancy

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That's too bad Robin ..... Barnes Jewish in St. Louis, almost talked me to boredom sleep, long before my first VEEG about what would happen and why. Then while I was there the RNs, the LPNs, SOME of the students, SOME of the interns and so on wore me out telling me what was happening and why.


(off subject -- once I had a bad, scary CP and a RN leaped up on my bed to throw her arms around me and hug until I calmed down and then bawled non-stop for a long time)

They already knew so much about me and knew what to do..... They knew caffine, lights, lack of sleep and such did not bother me or cause sz. They quickly reduced meds and made me ride that nasty ;) bike. I seized as they planned. Because of their reduction of meds I was NEVER allowed out of bed without help .... when I needed to go to bathroom I had to ring for assistance. I could not brush my teeth without someone standing beside me. Good grief.
 

RobinN

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... well the difference is that I was with my daughter the whole night. It was a pediatric section of the hospital since she was 14 at the time. I got to sleep in a chair. No one came to play with her. In fact we were leaving before they even bothered to bring the cart by with games to play.

This was UCLA hospital, and I was not impressed. Other than the nurses were very kind.
 

Lisa

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I do hope they try hard w/ their bag of tricks. I have no idea what my triggers are becsause they seem to be soo random. The only thing I can possibly relate is lack of sleep, but those times I was physically exhausted, and more than riding a bicycle can do. So maybe w/ the removal of med this might work. Last time they didnt remove any drugs, and it seemed like a waste of time.
 

Nancy

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One more thing Lisa -- we will all be behind you in our hearts and that just might help.

I sure hope you can take a lap top! That would really make the time go faster and easier.

Robin - Barnes is an over crowded, over worked hospital. Coming out of that what I thought was fairly serious surgery (!!) I was slammed into a small rooms with two.

But for the VEEGs I was always in private rooms with two beds because they expect and plan that a mate or parent will ALWAYS insist on being with the patient. Over and over I was told that my husband would not be charged for staying overnight but would be charged for any meals. LOL - guess how many nights my husband stayed..... guess how many times he came to visit.
 

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A few more things from someone who's been through it all

Umm LISA?

About Nancy's post?

Check with the Hospital first; some have changed
policies on WiFi's (laptops/notebooks).

(For everyone else who enters into the Hospitalization
whether Short Term Monitoring or Long Term Monitoring
in Video EEG's - for Teens and older; it is very wise to
follow up with the HOSPITAL NEUROLOGY UNIT - not
the Epileptologist / Neurologist / Neurosurgeon's Office;
regarding the usage of WiFi's (notebook / laptops). While
the Doctor may give you permission - the Hospital on the
other hand may imply just the opposite!)

***NOTE: Not all Hospitals have WiFi access ***

It is a good idea to bring a book, sketch book (if you draw),
puzzle book, but not a whole lot of stuff. Room sizes differs
from Hospital to Hospital. Some are roomy and some are
somewhat cramped.

IT IS a good idea to also find out if you are going to be confined
to the bed or tethered to the EEG monitoring machine - which
would enable you to move about; and the cable length can vary
anywhere from 8 feet to 12 feet (or longer). Some have full bath-
room privileges and privacy; others have a "curtain type" bathroom
privacy, and those confined to bed are required to have a Nurse.

All of these things should be reviewed and gone over with
if not already.
 
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