Video EEG

[Brent]

Hi,

I was having SZs daily (various partial SZs ranging from mild auditory hallucinations to partial atonic with loss of consciousness) - sometimes 2-3 a day, sometimes not for a couple of days. My neurologist started me on Keppra about 6 weeks ago, and I have completely turned around. I've had one breakthrough SZ in the last month (aside from a couple tiny ones).

I've had CT, MRI, EEG, blood work - the whole gamut. The EEG showed abnormalities in the left hemisphere, which is understandable since my symptoms are primarily right-sided. Nothing clearly epileptic though. She (my neurologist) wants me to drive down (about 2 hours) to do an inpatient video EEG, which is supposed to take anywhere from 5-14 days.

I have better than average insurance, but factoring in my cost after insurance and lost wages from being in the hospital, it will cost me at least $4000. That would be a major hardship for me right now.

My thought though, is that there doesn't seem to be a purpose in doing the test. When I asked my neurologist, she gave me two reasons:

a) It will tell me whether or not I am having seizures ... which I already know I am having. The fact that the Keppra pretty much put a stop to it supports that.

b) It will tell me which part of the brain is affected. I can't see how that matters. It is not going to change the outcome or treatment.

My position is pretty much that there are really only two ways seizures are treated: meds and surgery. In my case, the meds are working, so ... case closed.

I'm wondering if anyone else has had experience with this sort of thing. I'm not looking for medical advice. Just wondering if anyone else has had to make this sort of decision and how they handled it.

-B

 

[roo]

I'm wondering if anyone else has had experience with this sort of thing. I'm not looking for medical advice. Just wondering if anyone else has had to make this sort of decision and how they handled it.

-B

Hi Brent,

I can pretty much understand your situation even though my own is different from yours.

My epileptologist wanted to put me into hospital for a week of video eeg testing, but I had to decline because of another illness I have. I am from Australia and the health system here is such that either you go into hospital as a public patient (which I would have been) or you can go into a private hospital if you have insurance. If i was to go in as a public patient I would have been sharing a ward with three other surgical/medical patients and I know from past experience that this would have made me very much sicker than I need to be. He understood this and agreed with my decision to not do it at this stage - but in the meantime we (my partner and I) have taken out private health insurance so that I can do it in about ten to twelve months time, in a private hospital in a single bed room, which might make it a bit easier on my overall health.

Perhaps, you could just give yourself some more time to consider the pros and cons - maybe it's something you could do when you have some annual leave from work and therefore it might not be so much of a financial burden to you.

It would be worthwhile you asking your neurologist again what she hopes to gain from this considering you feel that you are doing relatively well on your meds at the moment, and explain to her just as you have here why you don't feel it is necessary at this point in time.

take care,
Roo

 

[Nakamova]

I'm with you Brent --

When I wanted to to try tapering off my meds, my neuro said "let's do an EEG to see if you still have abnormal brainwaves." And I told her that since: A. EEGs can have both false positives and false negatives, and B. It was going to cost me bucks , and C. I wanted to try tapering off anyway -- what was the point of having the EEG? So I didn't.

My neuro also wants me to have a bone density test to see if the meds have caused any problems, but my regular doctor said "No" because the tests aren't accurate and aren't good predictors of who will get osteoporosis, and also that there would be no treatment at this point anyway other than taking calcium supps (which I already do).


My neuro is into tests. I can see their usefulness in some situations, but opting out hasn't had any downsides for me.

 

[Cint]

My position is pretty much that there are really only two ways seizures are treated: meds and surgery. In my case, the meds are working, so ... case closed.
-B

I agree with you, Brent. If it ain't broke, don't fix it.
The only time I had the Video EEG was when I was being evaluated for brain surgery. I was in the hospital for 10 days. And even after the left temporal lobectomy, I was having seizures but haven't had another Video EEG.

 

[roo]

Brent

I forgot in my last post to add that my epileptologist suspects nocturnal seizures. Does your neurologist think this could be happening with you also? If not, then I would see little point in going ahead with it if everything is going okay for you right now.

 

[Brent]

We haven't discussed nocturnal seizures, but I wouldn't rule it out.