tumor as seizure cause

[resident slow guy]

hi everybody,

just wanted to introduce myself, so here goes.

I'm ralph, I was diagnosed with an astrocytome II back in 2000, I've had three or four major debulking surgeries since. I am also experiencing some really wierd 'seizure' type things. my neurologist says they are frontal/temporal lobe partial seizures. the tumor is slowly growing into my motor cortex, so I'm living in fear of the day that the 'big one' (grand mal) comes.

I'm not so sure what i want to accomplish by coming here, I guess it helps a lot to just talk about it.
to keep track of how many seizures, I keep a seizure log on my calendar, i note time and severity (from 1 - 10, a 1 being the mildest....so far the worst I've had is a 6.0, anything above a 7 would land me in the er) and today i've had 2 5.0's and one 5.5) I do this to keep track of if things are getting better or worse.

anyways, I'm not really sure if what I have is epileptic seizures or not, because they are not motoric, they're more weird emotional and wierd sensation seizures. the last one I had, I could've sworn my left hand was going to pop like an overinflated balloon. my neurosurgeon told me I can expect full blown tonic/clonic grand mal seizures once the tumor grows more into the motor cortex.

well that's enough for right now.

[RobinN]

Hi Ralph - Welcome to CWE
So sorry that you are having to deal with all that you have.

I guess my daughters have been 7-8's and that is mostly what she has. Luckily I don't think she is scared anymore. She just knows it has happened when she is on the ground, and others are standing around her when she comes to.

Is there a way to control your tumor? I gather removing it from that area isn't possible.

[skillefer]

Hi ralph! Welcome to CWE. Feel free to look around, chime in, vent in the padded room, or ask questions.

[epileric]

Good to have another Canadian here so get comfy and accept a complimentary cup of coffee, eh The people here are really friendly & very supportive. I've also found tons of information about epilepsy itself so check out as much of the site as you can.

I do feel for you. Ironically one thing that helps seizures is a lack of stress. You're smart to keep track of your seizures, I did that for a long time then I started keeping track of when I wake up or go to sleep, when & what I eat, & when I move my bowels. All that to see if I can find what triggers my seizures.

Also just because what's effecting you isn't motor doesn't mean it's not a seizure. Check out the types of seizures http://www.webmd.com/epilepsy/guide/...their-symptoms & see if any of them correspond to what you're experiencing.

[resident slow guy]

mornin everybody.

tumor control is basically done thru debulking surgery, which is pretty much what it sound like: they cut open a chunk of skull, shove the healthy tissue to the side, and cut out as much of the tumor tissue as they can without (hopefully) removing any healthy tissue. because this tumor type (glioma II) grows like plat roots thru soil, it's impossible for them to remove it 100%, which means it keeps coming back over and over again. I need debulking about once every three to five years, providing the tumor doesn't go malignant on me. chemo and radiation are useless against this tumor type.
interestingly enough, at the time of 1st diagnosis I was told the tumor was inoperable. three years later they had refined 'neurologist navigation' enough that it was possible. neurologist navigation is a bit like gps nav - turn right here, goo straight. ooops - turn around at the next possible place....
I'm working on reducing my stress. I'm a stay at home dad right now (2 boys, 1 is 9 the other 7) and I'm really enjoying perfecting my slow-food recipes, and baking a lot.
well, gotta get the kids ready for school, I'll check back later.

[LivingFruity]

Hi Ralph Welcome to CWE!!! Make yourself at home and have a look around. There's a lot of support and encouragement here. We're really glad to have you!!!

[Dutch mom]

Welcome Ralph!

I thought you might be interested in this article
http://www.nutritionandmetabolism.com/content/4/1/5

http://www.pubmedcentral.nih.gov/art...?artid=1819381

This study evaluated the efficacy of KetoCal®, a new nutritionally balanced high fat/low carbohydrate ketogenic diet for children with epilepsy, on the growth and vascularity of a malignant mouse astrocytoma (CT-2A) and a human malignant glioma (U87-MG).

As mom to a kid on the ketogenic diet I've been corresponding in 2007 with the mom of the boy with the 'human malignant glioma' mentioned in the article; his brain tumor stopped growing and even got smaller after starting a 100% ketocal diet.

In 1995 an article was published by Linda Nebbeling about 2 other pediadric cases of succes treating these tumors with a ketocal diet.

The ketogenic diet is used as a succesfull alternative treatment for severe childhood epilepsy ánd is an experimental treatment for some types of braintumors. The Erasmus Academic Hospital in Rotterdam (Holland) treats children with epilepsy with the ketogenic diet for over 15 years and has started a study and treatment protocol for the Ketogenic diet and braintumors in 2007 (adults and children.)

[Bernard]

Hi Ralph, welcome to the forum.

Sorry to hear about your tumor.