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Right Temporal Lobectomy,Removal of Brain Tumor +Effects+Autism

Sat, 05/31/2008 - 19:06

Hello everyone,  My scetch of epilepsy life goes: I begin having seizures at age 2.  Not sure what year they did the tests, but they found a benign brain tumor.  I started anti-seizure meds and continued until right after my surgery.  Over time they determined I should have surgery to remove this tumor.  The surgery happened  when I was 9 , back in 1992.  It appeared successful at the time.  I would still get auras, but nothing like before.  Well less than a year later my parents moved out of the state away from my doctors.  And that was it.  I don't want to get to personal, but pretty much my parents neglected me/medical problems from then on.   Never addressed my learning problems in school or medical problems that arose,  I barely grad high school in 2001.  Wellll, time is catchin up with me.  I am 25 and problems are catching up too.  About a year ago a friend of mines grandson was at her house and she started telling me how he, at age 4, just said his first word, that he has autism.  So out of curiousity I looked it up to see what it was, and it astonished me, it sounded like a mix of everything.  Somedays I feel like I am just waiting to die, rather than actively being able to live and not just stare off into a mindless oblivion.

Here are some after effects of surgery I had, for all you out there who would like to know: 

*started menstration at age 10, quit having regular at age 13, don't have any now.

*depression/suicidal throughtout teens, whether from my environment growing up or otherwise

*Lack of comprehension,  learning difficulties

*Lack/no of socialization in school, poor speech

*Memory loss/mind feels numb, jumbled mind/brain overload

*emotionally stale

*over sensative to light, touch.

*anxiety

*weight gain (whether from depression/lack of proper hormones, etc)

*auras and auras where you want to swallow a lot and or vomit.

*feeling of complete hotness for no reason (face and neck get lobster red) then feelings of complete coldness (pale and vomit feeling)

*digestive tract issues

*right side of my face is sorta "droopy"

*scar area is pretty well numb

 I found this website helpful in reading about the temporal lobes and the functions:  http://amenclinics.com/bp/systems/temporal.php

In conclusion my questions are:

1) Anyone else have autism too, that went undiagnosed or epilepsy+autism?

 2) Any idea what my chance are of getting medicaid?, I havent seen a nurologist in about 15 yrs or seen a good doctor in years either.  BUT, I don't have any official diagnoses to present to the Medicaid folks, to receive assistance.  I know its different in every state, but any info I get is great.  I am also very low income and not able to support myself and have no insurance (I am single w/o kids living with a relative.) My ultimate goal is to find out if the autism is true for me and ultimately get some cognitive/neurological therapy that I should have had earlier; whatever the options are these days for that.  And do more MRI/brain scans if nurologists suggests and medicaid will cover this. (Someone else online told me that I may still have small seizures and may think its just the norm) Any idea if they do cover this stuff?

3)Any other options I have that I may not be aware of for my situation?

Any comments of your own experiences post surgery I would love to hear, thank you 100 times over for assistance.

 

Comments

Re: Right Temporal Lobectomy,Removal of Brain Tumor +Effects+Aut

Submitted by raefactor on Tue, 2008-08-19 - 19:20

never had surgery and don't personally have autism/autism spectrum disorder (just physical problems many people with autism have, like sensory seizures and learning disabilities and sensory peculiarities), but one of my brothers does.  Since autism is very closely linked with seizures according to some people, it makes sense you might have some issues.

 As far as medicaid goes, I could be wrong, but I'm pretty sure they look at your income and your ability to work rather than any actual diagnosis.  If you can get a letter stating you're unable to work from your doctor then file and some other complicated stuff, you can get federal insurance and income.

<3 

never had surgery and don't personally have autism/autism spectrum disorder (just physical problems many people with autism have, like sensory seizures and learning disabilities and sensory peculiarities), but one of my brothers does.  Since autism is very closely linked with seizures according to some people, it makes sense you might have some issues.

 As far as medicaid goes, I could be wrong, but I'm pretty sure they look at your income and your ability to work rather than any actual diagnosis.  If you can get a letter stating you're unable to work from your doctor then file and some other complicated stuff, you can get federal insurance and income.

<3 

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