Update plus question: Has anyone ever had an MEG?

[travel bug]

The last time I was here, I thought that my new seizure activity after 4 1/2 years was because of a change in suppliers of generic keppra. Oops! It turns out my brain tumor had grown back. Because it was in a particularly delicate area (are there any areas that aren't delicate, really?)my surgeon sent me to UCSF (University of California at San Francisco) where they deal with a lot of tumors and have developed brain mapping. One of the tools they use is an MEG, It's like a cross between an mri and an eeg. You have little discs placed on your head, but not like for an eeg because you also have them on your head for the regular mri and there are only about 9 or 10 instead of the dozens you have for an eeg. Anyway, you put your head in what looks like a huge plastic helmet (remember the Great Kazoo on the old Flintstones? ) As they told me, the hardest part is staying awake during it because you have to be still and calm while they have you look at pictures and name what you see; come up with a verb to go with a noun they give you; repeat the nonsense words that you hear; then they put little doodads on your fingers, toes, and lips, and you tell them when you feel something.

Anyway, I thought it was interesting and just wondered if anyone else has had this done.

Oh, btw, my surgery went really well. All traces of tumor visible on the mri were removed with only minor deficits, which, considering the location of the tumor, was pretty amazing.

 

[Zolt]

Wooo hoooo Travel bug, Glad to hear they were able to remove all visible traces of the tumor.

I had mine out 8 yrs ago and so far no return, yet!! Mine was the size of a baseball, i refused to have radiation after the surgery, since the doc said since the size was so big, i won't be able to work if i get the radiation treatment. So i said, ok, then i don't want it.

I haven't' had that new form of mri/eeg, i may ask for it doh.

How long was it before your tumor returned?


iano: op:

 

[travel bug]

Eight years with no regrowth - that's wonderful! But yikes! A baseball sized tumor sounds frightening. Did you have many symptoms leading up to your diagnosis? I'm assuming they removed it as soon as it was discovered - or very soon after.

Mine was diagnosed in January of '07after my first ever seizure, but because the tumor was near the motor cortex, and because it was only about 3 x 4 1/2 cms, the doctor took a watch and wait approach. I had surgery in January of '09, but they were only able to remove a small amount. Chemotherapy took care of the rest. It was stable until late last year, but I didn't get an mri until January of this year. Real smart

Anyway, long story short, my tumor has progressed to grade III, but it's an oligodendroglioma, the least aggresive of the malignant gliomas, so I'm not giving up yet!

I definitely agree about radiation. I've read too many disturbing things about long term side effects. I want to hold off and use it only if I have to. Fortunately, the neuro-oncologist at UCSF agrees that I shouldn't deal with radiation just yet.

Look up magnetoencephalography (I think I spelled it right ), it's really interesting...but I'm kind of a geek