Can you explain PET scans to me?

[Endless]

Hi, everybody.

My epileptologist wants me to do a PET scan. I understand that it measures glucose uptake to pinpoint where seizures are happening in the brain. Lower glucose uptake = seizure area. Higher glucose uptake = possible tumor.

My confusion is over WHY he has oredered it. Online it says the test is mainly for pre-surgery candidates. I am not a candidate for surgery. Why else would he order it?

I've had negative eeg's & a negative MRI (only minor normal age-related white spots on my MRI). The type of MRI that looks for strokes was negative, too. My seizure meds are starting to work well now, and I think soon things will be under control.

Why would he order a PET? They are expensive, and I'm extremely claustrophobic. I'd rather skip it, unless it would make a difference in my treatment. In my opinion, additonal expensive tests don't always equal better treatment.

Any ideas around reasons why he'd order one???

[Nakamova]

I agree there seems to be no good reason to have a PET scan unless you are considering surgery. I would ask your epileptologist for his justification for the procedure. In my experience docs are way too test-happy...

[Zoofemme]

Maybe you're doctor hasn't completely ruled out the possibility of surgery? Maybe He isn't satisfied by the negative MRI/EEG since it is obvious that you have seizures so they are hoping that the PET scan might help them better pinpoint the problem area, especially since you have had negative reactions to many of the E meds?

More than likely though, like Nakamova said, docs are just way to test happy, lol. I'd definitely Ask him first before jumping into this one...PET scans are boku expensive and with you being claustriphobic I don't know that it is worth it if he is doing it "just because".

[epileric]

Maybe you're doctor hasn't completely ruled out the possibility of surgery?

I would hate to have a doctor that would consider something as serious as surgery without asking me first if I'd want it as an option.

[Zoofemme]

I would hate to have a doctor that would consider something as serious as surgery without asking me first if I'd want it as an option.

Hi Epileric...I put it out there because it was one of the first things my new neurologist threw at us at my first appointment. It took my husband and I both aback because no doctor had ever mentioned it before.

[epileric]

It's always good to have that option but like you said, it was something your neurologist threw at you. I don't believe it was mentioned to Endless.

[Endless]

Got the answer. The long term disability review neurologst is basically the guy who decides if I get a long term disability insurance payment while I'm off work. I've only been off a little while and I'm going back soon, and the payments don't kick in until you've been off work a certain amount of time anyway, so we're not talking a lot of money here. The insurance doc says they need TEST evidence I have epilepsy. Since my EEG was negative, my doc is trying to get that for me. I'm up in the air whether I'll do the PET. I'll think on it and decide what wins out - my claustrophobia, or a small amount of money. Close call.

In the meantime, my neurologist scared me. I thought maybe he had found something in my first MRI that was prompting the tests. The radiologist said my first MRI was normal, but I think my neurologist just got around to reading the films himself. Turns out, all's fine.

[Nakamova]

You've come across one of the major issues with epilepsy and insurance -- the insurance companies want test results even though in many cases there isn't anything other than clinical symptoms to go by.