VEEG results questions

[Sonny]

I had a 5 day VEEG several months ago, and the only discussion my Neurologist had about it is the single sentence 'it came back normal'.

During the 5 days I did everything I could to induce seizure activity. I pedaled everyday, hyperventilated for 5 minutes 3x's a day (which was required at this center), and I find I am sensitive to lights w/patterns (versus just flashing lights) so I watched animated .GIF patterns on my tablet.

I only had a few episodes: 2 "Simple Partial" (both just deja' vu), a lot of jerking, and a head drop. And only 2 of them (the Simple Partials) were actually recorded/time stamped.

So my questions to anyone who might know...

Does the whole EEG pattern/waves get looked over by a doctor?
Or does only the time stamped EEG pattern get looked over, and things could be missed?

And if the EEG patterns are read, could this mean the jerks and head droop are non-epileptic?
Specifically: do myoclonic/atonic seizures always show up on EEGs because they are generalized seizures (unlike Partials which can be 'too deep')?

 

[Ruth]

Welcome Sonny,

I have had epilepsy for over 60 years. I have had a lot of experience with doctors and EEG's. Every doctor does it different. Ask your doctor how she/he does it? Anything on any test can be missed.

Atonic seizures are "falling down seizures." I have those. I fall down a lot.

 

[masterjen]

Ideally the whole EEG should be read. Abnormalities can show up at times other than during a seizure that may shed light on not only a seizure disorder but other problems as well.
As for the video portion of the VEEG, epileptologists (neurologists who specialize in epilepsy) can typically identify whether something that occurred is consistent with epileptic seizure behavior even if the EEG at the time of the seizure is normal. In such cases, very often two or even three epileptologists will independently review the video and provide opinions.
If there continues to be confusion about what your episodes are, I would suggest seeing an epileptologist. If you are already seeing one, don't be afraid to seek a second opinion from another one.

 

[Ruth]

Ideally the whole EEG should be read. Abnormalities can show up at times other than during a seizure that may shed light on not only a seizure disorder but other problems as well.
As for the video portion of the VEEG, epileptologists (neurologists who specialize in epilepsy) can typically identify whether something that occurred is consistent with epileptic seizure behavior even if the EEG at the time of the seizure is normal.

What is ideal and what is reality is two different things.

I remember when you could hear the noise the seizures made during an EEG. When I mentioned it, the technician turned off the sound.

I was having an EEG and another health problem showed up. I had a full-blown Parkinson's Disease attack. It showed up on the EEG.

When I went back to see the neurologist, she told me that she threw it away. She was looking for epilepsy, not my Parkinson's. I was mad!! I wanted to see what it looked like on the EEG.

A lot of doctors will show you your VEEG or EEG. I have seen a lot of mine. I ask. I have learned how to read them.

 

[masterjen]

What is ideal and what is reality is two different things.

I guess that is a difference between Canada and the US. In Canada doctors are legally required to keep the entire EEG/VEEG, at least in part because it allows comparison of data over time should subsequent EEGs be performed. I would imagine it would also allow doctors to check each other's findings which is sometimes required in cases of uncertain results.

 

[Sonny]

Welcome Sonny,
Atonic seizures are "falling down seizures." I have those. I fall down a lot.

I haven't had any full blown "falling down" events, but I lose muscle tone in my neck causing my head to drop (and my eyelids will flutter) - it literally lasts only a few seconds. I have no idea if these are Atonic are not, considering it could be a different seizure or even a different event (like Narcolepsy??? Idk).

May I ask, do you have "smaller" events like head drops, or are all your Atonics "falling down seizures"?

Ideally the whole EEG should be read. Abnormalities can show up at times other than during a seizure that may shed light on not only a seizure disorder but other problems as well.
As for the video portion of the VEEG, epileptologists (neurologists who specialize in epilepsy) can typically identify whether something that occurred is consistent with epileptic seizure behavior even if the EEG at the time of the seizure is normal. In such cases, very often two or even three epileptologists will independently review the video and provide opinions.
If there continues to be confusion about what your episodes are, I would suggest seeing an epileptologist. If you are already seeing one, don't be afraid to seek a second opinion from another one.

I'm not seeing a Epileptologist, but I do see a Neurologist who ;Specializes in Epilepsy' - I am unsure how much of a difference there is between the two? My Neurologist already has let me know she is the most "qualified and experienced" personnel in Epilepsy of the Neurology unit (she works at a Teaching Hospital). So I trust she is pretty well qualified.

What is ideal and what is reality is two different things.

I remember when you could hear the noise the seizures made during an EEG. When I mentioned it, the technician turned off the sound.

I was having an EEG and another health problem showed up. I had a full-blown Parkinson's Disease attack. It showed up on the EEG.

When I went back to see the neurologist, she told me that she threw it away. She was looking for epilepsy, not my Parkinson's. I was mad!! I wanted to see what it looked like on the EEG.

A lot of doctors will show you your VEEG or EEG. I have seen a lot of mine. I ask. I have learned how to read them.

So I have the right to ask to look at my Video and my EEG Results?

I was given the V-EEG report and the "head drop" was NOT logged, and when I got the courage to mention to look up the time I am positive she looked at the wrong time.

Is it okay as a patient to request to look over the Video and EEG results with the doctor together? Or is that crossing boundaries??

 

[Nakamova]

Is it okay as a patient to request to look over the Video and EEG results with the doctor together? Or is that crossing boundaries??

It is always okay to ask -- remember the doctor is working for you, not the other way around. If the doctor resists, explain that having more information would make you more comfortable with and confident in the doctor's interpretation. Your neuro should be supportive. It's in both your interests.