Saturday, May 31, 2014

Neurotic Thoughts - Seizures, Tumors and Second Opinions


Seize the Sagittal T1 view of my brain.
[warning: foul language]

It's been a rough ride but I am still here.

I do not have a brain tumor. Repeat. I do not have a brain tumor. I want to establish this before my kids, friends or family read this and freak out. It's not a toomah.

Fifteen days ago I walked into my Neurologist's office. The words "low-grade glioma; right parietal lobe" were spoken into the computer's voice recognition software system. I was never directly addressed about this.

You think I have a brain tumor and you are not going to say anything directly to me about it? I was told to add an aspirin daily, switch a seizure medication and have another MRI in 3 months. I wasn't shown an image of the monster lurking in my skull. Nothing.

And that was it. "See you next month." * awkward handshake*

To be fair, Neurologists are odd creatures. They are not unlike Physicists or Engineers - socially awkward but fascinating nerds. I like them, they are my people, people of Science.

But man, say it to my face, make a completely inappropriate joke, draw a dick on my follow-up appointment card, don't just talk to the computer. :/

A million thoughts jumbled into my already overly active seizure ridden brain. What stage is this tumor at? What's the next step? What do I tell my family? When? Should I? How many years will I have left? Brain surgery? Right parietal? Oh hell no! They don't even shave the COOL mohawk part of your head for that. Lame.

I went home.

An undergrad in Biology really doesn't prepare you for the anxiety that surrounds the possibility of having a brain tumor, you do a bit of  Neurology related overview in A&P, Pathophysiology, Biochem, Genetics - but that's about it. Over the next week I learned enough about Radiological imaging (specifically brain MRIs) to be able to tell the difference between a T1 and T2 coronal Flair, etc. - so I could start asking questions - of anyone, elsewhere, anywhere who knew what the hell they were talking about.

I looked an thousands of normal brain MRIs as a starting point.  I read hundreds of published studies. I dug through case studies of abnormal brain MRIs of people with Epilepsy with seizures like my own. The difference between a normal MRI and an abnormal MRI is not always so simple, sometimes it is subtle, too subtle for an untrained unguided eye. I had 600 personal images to look through and the area of my brain that my Radiology report said was abnormal - well, I could not find an abnormality. I also did not have the 4 years of education it takes to begin to understand how to interpret funny brain pictures.

I uploaded the entirety of my MRIs to a private server on the Internet and learned enough jargon to create a decent presentation which I then shared with a number of people who are highly skilled in interpreting funny brain pictures. I got not only a second opinion but a third, a fourth and a fifth. It was a great relief to see so many people come together and although they disagreed over subtleties they agreed on one primary thing - most importantly that it is highly unlikely that it's a low-grade glioma - IT'S NOT A TUMOR.

I could never find the abnormality I searched desperately for because my Radiology report was interpreted incorrectly. The primary abnormality listed on the report is located in my right temporal lobe NOT my right parietal lobe.This makes a huge difference when dealing with care and treatment options. It also lets me know that my undergrad in Biology was not a complete waste - I still know the difference between my ass and a hole in the ground and my temporal and my parietal lobe; my diagnosing Radiologist, I'm not so sure about - I don't know how many images this person processes a day or the last time this person slept. This is my life and I am my medical advocate.

So, I don't have a brain tumor. During my discussions with my expert panel even further abnormalities in my brain were brought to light that require treatment and further study. The left side of my brain is having mini strokes which domino effect into seizures and that needs to be addressed because bitches be going numb and dropping and shit. Falling on the floor and busting your head, twisting your ankles and having black and blue legs sucks. I want to wear high heels and drive a freaking car already.

I have a good roadmap for directing my medical care. I am not in the dark.

My new medication is working well for controlling the majority of my seizures and migraines but has taken away my beer drinking superpower (EVERYTHING carbonated tastes like salt, bile and Dawn dishwashing detergent, shaken not stirred) but I have gained a new superpower - I am dropping weight like mad and oh my gawd I am going to look sooo good at prom this year.*hairflip*


*/RQ

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