Prepping for my neuro visit tomorrow

I’ve got another neuro visit tomorrow — this one is finally a substantial one, when I’ll actually be reviewing the results of my MRI and my EEG. It’s been about a month since I got my MRI, and it’s been nearly 3 weeks since my EEG, and the suspense has been really intense at times.

In my more dramatic moments, part of me thinks, “Today is the last ‘normal’ day/week of my life.” And I get all worked up, thinking that these test results might come back with terrible news or some sign of a horrible condition/disease/tumor/whatever that will sideline me permanently — or at least turn my life into one big detour.

I worry that I won’t be fully functional anymore. That I’ll have to invest all this extra time and energy in overcoming a real issue that I’ve blissfully ignored for a long time. That I’ll be officially disabled. That I’ll be “less than human” and have to live a second-rate life as a result of what the pictures of my brain show.

I also worry that they won’t find anything at all… that I’ll turn out to be crazy and people will look at me like I’m just looking for attention… making things up… malingering… defrauding professional service providers.

Worst of all, I think, would be getting inconclusive results that will waylay my energy and keep me pre-occupied trying to track down the root cause of stuff that’s been getting in my way for a long time, but I’ve been able to brush off and minimize until the past year or so.

I’d almost rather get no results than inconclusive ones. But whatever happens, happens. And I’ll just deal with whatever comes up. I always do.

This waiting around for test results is really exhausting. Especially since I never got any medical attention for any of my multiple TBI’s, and I don’t have a lot of reliable medical records describing my symptoms and issues in medical jargon-y detail. I’ve never been able to articulate my issues to doctors with any level of accuracy, and most of the time, I’ve just given up and said, “Oh, forget it — it’s not that bad, really…” and went off to lick my wounds where I was safe and warm and able to tend to myself and my problems on my own terms.

I swear, this cognitive-challenge/communication-difficulty stuff just makes me nuts. I have a hell of a time articulating my issues out loud to doctors, who are all too often looking for medical data and/or some Latin-based vocabulary in order to properly assess my situation. I don’t know Latin, and I don’t have medical records that show evidence of my injuries. All I have is my life experience and a muddled, garbled mish-mash of out-loud observations that don’t come across right, when I’m talking to someone who doesn’t know me personally (and even if they do, can’t for the life of them imagine that I’ve actually been injured). Absent concrete data, I’m out of luck… so, I’ve been largely resigned over the years to just being out of luck.

Oh, well… what’s next? Life is waiting…

But tomorrow, I will actually be having a discussion with a doctor about real, honest-to-goodness medical test results. Imagine that. I am really looking forward to it. I’m looking forward to it so much that I’ve been studying up on MRI’s and EEG’s and learning to recognize what they show.

I found a couple of great sites for learning about them — with plenty of pictures, which I desperately need.

There’s the section on Electroencephalography and Evoked Potentials followed by their Electroencephalography Atlas over at Medline. I have been studying the page on Normal Awake EEG
so I know what I’m looking at, when the doctor shows me what’s going on with me. I’m studying the normal EEG, as well as other types, so I can tell the difference — if there is any — between what my EEG looks like and what a normal one would look like.

Normal Awake EEG - A 10-second segment showing a well-formed and well-regulated alpha rhythm at 9 Hz.

Normal Awake EEG : A 10-second segment showing a well-formed and well-regulated alpha rhythm at 9 Hz.

I’ve also been studying MRI’s over at Harvard’s Whole Brain Atlas, which shows what a normal MRI looks like — with the different slices — so that when I look at my own MRI, I can see if/how it differs from how it “should” look.

The Whole Brain Atlas

They have MRI slices from different scenarios —

  • Normal Brain
  • Cerebrovascular Disease (stroke or “brain attack”)
  • Neoplastic Disease (brain tumor)
  • Degenerative Disease
  • Inflammatory or Infectious Disease

And you can look at the slices from different angles, which is way cool!

I’ve been studying the normal brain MRI slices, so I am better able to understand what — if anything — is wrong with my gourd.

Now, on a wireless or dialup connection, the images load a little slowly, but on broadband/cable modem, they’re speedy.

Okay, so I know I’m a bit of a nerd/geek, but this just fascinates me. I’m also studying EEG electrode placement patterns, so when I look at my own EEG, if there is any abnormal activity, I can see what area of my brain it takes place in.

Electrodes are placed on 10-20 different areas of the scalp, and they’re lettered/numbered by position. F means Frontal Lobe, T means Temporal Lobe, O means Occipital Lobe, P means Parietal Lobe, and combinations of them mean the electrodes are getting data from more than one lobe. The numbers are odd on the left side of the head and are even on the right side. Here’s an image I’ve been studying:

eeg electrode placement - click to enlarge

I think it’s fascinating. And I have a lot to learn. I think I’ll get myself a balloon and blow it up, then write all the electrode numbers on the balloon with a permanent marker, so I have a 3D version of the placement to take with me to the doctor. I’ll let the air out of the balloon, so I can take it with me easily and then blow it up at the doctor’s office so I can see what’s up, when they start talking about the different readings of my brain.

Of course, this may be moot, if my EEG comes back perfectly normal, but in case it doesn’t, I would like to understand where/how/why things are ‘off’ with me… what it means… and if/how any of my prior TBIs have specifically impacted certain parts of my brain.

This stuff just fascinates me. It’s a lot to take in, and it can actually be pretty serious, but for now I’m going to entertain myself… not to mention distract myself from all the different scenarios my broken brain is coming up with.

Sometimes the inside of my head is a scary place to be.

Working my way through all this…

It’s been a few months, since I first put 2 and 2 together and realized that there was actually an “umbrella” that I could collect all my internal issues under — Mild Traumatic Brain Injury, or MTBI.

I’ve been talking to folks in support groups and medical professionals, and it just amazes me how little information is readily available, unless you’re “locked on target” and deliberately seeking it out. I am locked on target and I’m on a mission to figure all this out, and it’s my hope that my writing on this blog will help others who are pretty much clueless about what TBI is and how it can affect your life and that of others.

I came across a great book, which I’m gradually working my way through, called Brain, Heal Thyself by a caretaker for a stroke survivor, who helped her friend return to functional health — despite what the medical establishment said was possible. I’m still reading, but on page xvi of the Introduction, one of the great things she says is how medical professionals like to say “Every stroke is different,” as a way to get out of answering our “weird” questions. Amen to that! I am so sick and tired of that lame cop-out, where people who go to school for many years, studying the dead and the dying (they start out with cadavers, after all, and often see only people who are so far gone they can no longer avoid visiting a doctor), can’t bring themselves to study the living… or give us the credence to take in the information we pass along to them, because it can’t be standardized, categorized and controlled the way they’d like.

I am just so sick of it. The conflicting information, the arrogance of a medical establishment that will say, one month — with all confidence — that eggs are undoubtedy very bad for you and will probably kill you if you eat too many of them… And then turn around the next month (apparently, when the Egg Growers Lobby raises a hue and cry and funds a conflicting study) and tells us — with absolutely certainty — that eggs are actually not bad for you, and you’ll probably suffer health defects and slide slowly downhill in a state of painful, irreversible physical decline, if you don’t eat three eggs a week.

These same people are running around doing studies and using advanced equipment for research, and either keeping their findings to themselves — locked away behind the wall of medical terminology — or discouraging “lay” people from finding out about it for themselves. I can’t tell you how many weird looks I get from doctors and clinicians, when I talk about research I’ve read or things I’ve observed in my own life.

And, as was the case yesterday, sometimes I’m contradicted on my findings by doctors who freely admit that they are not experts in TBI — and actually say they know next to nothing about it — but they’re sure I must be wrong about my symptoms. Probably because I’m not a doctor.

But I live in this body. I am living this life. And if anyone should know what’s going on inside my little head, it would be me… provided, of course, I can apply unsparingly rigorous “reality checks” to what I think I’m seeing/hearing/thinking/experiencing.

That’s the pecadillo about impaired self-awareness. The one person who should/could be the expert on their brain, might not be. It’s maddening. But there are ways around this — when you know you’ve got limitations, you can plan for them, work around them, accommodate them, and adjust your standard deviation metrics.

So, I’m just working my way through all this. Trying not to get locked into one “set” way of thinking about how my brain functions, sticking with the facts of the matter:

  • I was struck in the head by a rock around age 8, was knocked out briefly/dazed and groggy afterwards, and I noticed significant changes in my behavior, moods, and cognitive abilities thereafter.
  • I fell down a flight of stairs in 2004, hit the back of my head several times, was intensely dazed/nearly knocked out for a few second, and thereafter found myself missing key information (like not recognizing people I worked with), unable to get a full night’s sleep, having intensified temper flares, and a whole raft of cognitive problems (like suddenly being unable to multitask and switch gears like I used to very fluidly), which I attributed to job stress, but which continued after I left the job (which imploded around me, when I couldn’t keep up with the pace).

I can’t keep second-guessing myself on my TBI(s), and I can’t give in to people who assume that because I do a really good impression of a normal person, it means there’s nothing wrong with me. There’s a whole lot wrong with me. Inside this head. That I can’t articulate very well with other people, when speaking. And I’ll have to work through this, one issue at a time.

If there’s anything I have, it’s time.