Normal MRI and EEG… or not?

One thing that has saved me from obsessing about my job situation is my neuropsychological fall-out from my TBIs. Not only did my partner finally (after more than six months) get to sit down with my neuropsych and start to ask questions from a qualified health care provider, but my copies of the MRI and EEG results/interpretations came from the hospital, and it appears that my tests were not 100% clear of all disruptions.

It’s been an exquisitely excruciating balance of good news and who-knows-what-kind-of news. And it has totally kept my mind off my job situation, which in my more vulnerable and fatigued moments just drives me ’round the bend. As much as I want to focus on my strengths and keep firm and steady, I still have a tremendous amount of insecurity around how my TBIs have affected me, work-wise, and I have deep-seated reservations about how well I’ll be able to perform, if I’ll be able to keep up, if I’ll be able to be the kind of team player I was before my fall down the stairs in 2004.

But things are moving along with regard to the neuropsychological exam, and good things are brewing there. That promise of improved coping abilities and good information made available in a way I/we can use it… as well as finding out I have a small pineal cyst, and learning that there was some rare theta slowing in one of my temporal lobes, have pretty much eclipsed my vocational concerns.

On an up note, my partner and I had a great session with my neuropsychologist last week. From the mouth of a professional, descriptions of my situation and my “challenges” sound a whole lot less scary, and my neuropsych had straightforward answers and suggestions, where I generally get turned around and agitated and even sometimes a bit combative when pressed for information. My partner got to ask the questions that have been burning in their mind for months and months, and they got total access to the doctor sitting across the desk from them. They got to see that my folder about my testing is 4-5 inches thick, and there are tons of tests I took, all of which rendered pertinent results. They got a real sense for how complex my situation is, and how good my doc is — how they really take their time and make sure they’re thorough and cover all the bases, which is a good thing.

I think it was a total relief for my partner, who was starting to think — I believe — that my neuropsych was lolly-gagging and taking their sweet old time. One other thing that was very beneficial was that the doctor had to take a call and talk someone through the steps of tracking down a loved one who was impaired, and keeping them from being a danger to themself. I’ve had appointments canceled and rescheduled with this doc numerous times, due to things like this, and my partner was thinking I was just being brushed off. When the phone call came in, they got to see the doctor in action and just having that experience really did a lot for their confidence in them.

I think my partner and I both have more good info to work with now, in regards to our marriage, and they can see that the problems I’m having are not necessarily due to my being deliberately stubborn and trying to yank their chain and ignore them. Yes, I can be difficult, but I’m a lot less deliberately problematic than my partner believes. I’ve been catching crap for years about being too inattentive, too oblivious, too lax, too lazy, too unmotivated, too absent-minded, too flighty… and now, at long last, I’m somewhat vindicated. They were told explicitly by the doc that I have trouble understanding spoken language in the moment, and it takes me longer to process information when someone is talking to me. All those times that I’ve gotten raked over the coals for not being responsive enough quickly enough can now be put behind us. We don’t have to do that anymore. And we can slow down. Something about having a doctor communicate the information I’ve been trying to convey over the past year is helping. I’m not going to question that. I’ll take it — it’s a gift.

On the other hand, my other doctor — the neurologist I saw in January and February — seems to have mucked things up a bit. I got a copy of the MRI and EEG analyses, and while they may read as “normal”, they are not without event. My MRI shows a small pineal cyst, and my EEG shows some theta slowing in one of my temporal lobes. In both cases, the anomalies are not great enough to warrant all-out alarm, but they are both something to keep an eye on.

In addition, the neuro wrote up notes from my visit and sent them to my PCP, and their description is not 100% accurate. They focused a great deal on the “rage” issues I’ve been having. I wouldn’t necessarily call them “rage” — just abrupt swings in emotion, in all directions. And they also mis-characterized my family history, making one of my relatives (who has had a lifetime of symptoms and experiences similar to my own, in some respects) look and sound like a rage-a-holic.

Oh        my        God…

Now I have to back-pedal and compose a letter to both my neuro and my PCP correcting the record. It sorta kinda freaks me out a bit. I’ve had so many unproductive relationships with doctors, I can’t even begin to say. Now, I finally managed to find someone I can work with and with whom I have established a decent rapport… only to have this neuro mis-characterize me and potentially undermine that relationship.  It’s bad enough that the neuro misunderstood me and is working off bad information. But now they’ve dragged my PCP into it, too. Ack.

So, my next steps are to communicate my situation in writing. I am going to:

  1. Work through this with my new therapist, who is a neuropsychologist themself, and who knows about TBI and can help me think through my response. I need to correct the record very thoroughly in writing and compose a letter to that effect.
  2. Send the letter to this neuro and my PCP.
  3. Follow up with my PCP about what to do with all this new information. I may need to do damage control. I want to keep the lines of communication open with them and make sure I’m not digging myself yet another hole.
  4. Probably find a new neuro. I really liked dealing with this one, for once, but they clearly were not present and were not dealing with what was in front of them. I’m not sure where they were, at the time we were talking… But no matter. They are so fired, and I’m off to find another neuro.
  5. Check in with my new therapist a lot through the whole process, to make sure I’m not making things worse for myself. That would be all too easy to do, and I want to do things different this time.

What this experience has really taught me — and there are some vital, valuable lessons here — is that I really need to approach my health care with my TBIs in mind. The biggest problems I’ve been having with health care, throughout my life, have revolved around communication. I have never had an easy time of describing my symptoms to doctors, nor have I done a very good job at collecting and analyzing information from them. I can see now that I’ve had a truly terrible time understanding what doctors are saying to me, parsing through it all, and then retaining it to act on it later.

And because I’ve had such a terrible time — all the while looking (to the untrained eye) like I should be more “with it,” so what the hell was I being such a freaking space-case about?and I’ve got a history of various trauma with plenty of PTSD to go along with it, I would get all revved and anxious and become either overly withdrawn or combative in this exaggerated fight-or-flight dynamic that probably every TBI/PTSD person knows all too intimately. And I would either come across as hostile and aggressive, or I would retreat into my shell and not speak up about what was going on with me.

Which never made for very good doctor-patient relations, I can tell you.

Now I need to take a different approach. Put the facts of my situation into writing. Take it slowly and deliberately and seek out help. Because at least that’s a way I can communicate with my doctors with 100% accuracy. And the next time I deal with any doctor, I’m going to summarize in writing my issues and give them to them — along with a note from my neuropsychologist that explains that no matter how bright I may look on the outside, no matter how extensive my vocabulary may be, no matter how conceptually “with it” I may be, my speed of processing is slower than one would expect, my ability to process spoken language in the moment is impaired, and my short-term memory is for shit. And I don’t mean to come across as hostile and argumentative — I just have a hard time dealing with my “asymmetrical” challenges.

The next thing I do  — after I correct the neuro’s info and send it to them and my PCP — is get a brief summary letter from my neuropsych explaining both the strengths I have and the limitations. I cannot see any more doctors until I have that in hand and I can give it to them in advance, so they can understand I am not malingering, I am not deliberately being difficult, I am not trying to make their lives more complicated, I’m not a malpractice risk, I just need help when it comes to communicating, and I’d appreciate it if they wouldn’t jump to conclusions about me, just ’cause I fell down and got hit on the head a lot over the course of my eventful life.

I am so done with dealing with doctors who don’t have all the information and can’t use their heads to observe what’s right in front of them. Maybe that’s not how medical professionals do things, but God gave them two eyes,  two ears, a nose, and a mouth, and it seems to have worked well for millennia, so why not avail oneself of one’s native abilities?

I’m also fed up with not being able to “read” what they are trying to communicate, and being held back by my broken brain’s penchant for meaningless detail. I’m tired of struggling with something I “shouldn’t” have problems with, getting lost… and not realizing I’m lost till several hours after I leave the doctor’s office.

I’m sick and tired of this whole hidden disability trip, all the ignorance, all the half-assed information, all the bias, all the cluelessness… and how the lowest common denominators seem to drive the situation. I’m tired of having to navigate the seas of truly debilitating difficulties, without anyone else realizing they’re a problem for me — and giving me shit because they are.

I am also fed up with doctors who don’t take time with me. I need to figure something out. I had considered double-booking appointments with my doctor — reserving twice as much time with them, so I don’t feel as rushed and I can ask all the questions I need to ask at a speed I can actually sustain. Either that, or I’ll get an “interpreter” to go with me and help me understand what the doctor is saying to me — and who can help me get them to slow down and stop rushing me. I think that having another person in the room with me to help me sort things out may be the way to go.

Honestly, does my health need to suffer, just ’cause someone doesn’t want to slow down? The rest of the world may think so, but I don’t. I’m just not going there. Something’s broken. And I’ve got to fix it.

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Quite possibly the coolest thing I’ve ever seen

Okay, for all you hard-core neuro-nerds out there, here’s something that’s quite likely to utterly consume your attention for hours — nee, days, even weeks and months — to come.

It’s RMR Systems, Ltd. 3DView Volume Rendering software, and it is a free download that you can install on your PC, and then look at MRI’s in three dimensions.

I mean, this stuff is so incredibly cool, it just boggles the mind. Here are images from the pre-loaded imaging that comes with it, which are “sliced and diced” on different planes. You can zoom in, cut in from all sides, do cross-sections, and other really cool stuff that I can’t even show here, because they really require a YouTube video to have the full effect. I may just make one of them… when I carve out the time from my crazy schedule.

Note: these are not pictures of me. My MRI images are for my eyes only… oh, and my doctors’ eyes.

Starting view from the Front

Starting view from the Side

Starting view from the Top

“Cut” view from the Top

“Cut” view from the Top and Side

“Cut” view from the Back and Side

“Cut” view from the Front, Top and Side

It really is amazing. Again,RMR Systems, Ltd. 3DView Volume Rendering software, is a free download that you can install on your PC, and then look at MRI’s in three dimensions. If you’ve had an MRI done and you want to see your brain in 3D, you must get a copy of this and view your slices with it.

Like some weirdo geeky Narcissus, I’ve been obsessed with viewing my own brain.

And for good reason.

OMG

2D/3D Medical Animation: TBI – Traumatic Brain Injury Part 2

I’m feeling a bit low today… tired and overwhelmed and feeling down about how much of my life has been derailed by my invisible neurological challenges. I actually had a productive day at work, but now I’m really tired, and it’s starting to show.

I do want to post something tonight, tho’… I have a full day tomorrow and may not be able to post much, but I wanted to share this with you:

2D/3D Medical Animation: TBI – Traumatic Brain Injury Part 2 on YouTube.

Somehow, it makes me feel better to know that my invisible issues are well-documented as being very real.

Still, I am tired, so I think I’ll hit the hay early.

G’night, all

Diving Into My MRI

I spent time yesterday studying my MRI, comparing my brain with pictures of normal MRI’s I found online at Google images. What a treasure trove Google is! Just being able to find pictures of what “normal” looks like has been a great boon to me.

Looking at MRIs can be very trippy, and looking at my own brain is kind of spooky. From looking at it, the untrained eye could easily become very disoriented and alarmed. But knowing what other normal MRIs look like is very helpful. How else would I know that I’m not a freak of nature? The brain is just so fascinating!

It’s so great to find descriptions of the normal brain MRIs, since it can be hard to figure out what you’re looking at. I’ve got a used textbook on neuroscience I picked up, as well as a copy of Netter’s Atlas of Human Anatomy, which is a hefty tome of highly detailed drawings (done by Dr. Netter) of virtually every part of the human body, which also have every little piece clearly marked and labelled. I look at my MRI, then I consult my Netter’s book, then I Google the part of my brain that I think I’m looking at and read about it, and then consult my neuroscience textbook, to read more in-depth information that’s at a student level. Fascinating.

But I’m surprised to be having such a hard time finding information on reading MRIs. Maybe I’m not looking in the right places. Maybe that type of information is too advanced to be safe to release into the public, lest we all fire our radiologists, start reading our own MRIs, and jump to conclusions about ourselves. I’ve already had people look askance at me, when I told them I was going to be studying my MRI. They clearly seemed to think that I’m not qualified to do it, but I figure, why let that stop me? I’m not getting paid by anyone to ply that trade, and I’m only interested in my own situation, and it’s really just for my own gratification, so I’m not letting their skepticism stop me. It’s my body. I’ll study it to my heart’s content.

I know there’s no substitute for a qualified neurologist or radiologist, but I really need to understand what’s going on with me, and nobody seems to have the time to spend with me to make sure I’m clear on what’s going on. It’s very discouraging to have this level of testing done, only to not be able to find someone to help me understand it. The neuro I saw a week ago wouldn’t give me any more information, other than that my tests read as normal. I asked if they could show me the film, but they brushed me off. Maybe they thought I’d be looking for something that doesn’t exist… malingering and all that. I’m not malingering. I’m curious! And honestly, I don’t want to milk this and make myself out to be sicker than I am. I just want to know why my life experience is so different from what I hear everyone else describing. I want to know why I have the many, many issues I’ve got. I want to know what makes my brain unique — and treat that uniqueness as a strength, not a weakness. And having MRI images to help me gain just a little more insight into my situation seems like a great opportunity to learn more… even/especially if what I learn is that my variations on experience are “within normal range” and not the sort of thing I need to be concerned about.

I did find some pictures of my brain that I have questions about. Places where there are asymmetries and/or dark/light spots that might be old injuries or some abnormality. The part of me that’s been on high alert — or hovering around there — is eager to run off to a neuro to get the spots and dots and bright places explained… to explain how the asymmetries in my brain might translate to some irregularities in how my mind works. I know I need to calm down, get some rest, let it all sink in. There’s no tremendous hurry, now that I know that I’m not in imminent danger from a brain tumor or MS or some other terrible neurological condition. I can relax, now. And I need to make more of an effort at doing that.

In the meantime, while I recover from my over-excitabilities, I’ll think about my next steps. Study normal MRIs online, look around, just do the whole visual image thing, getting my eyes used to the sight of MRIs, so when I do get a chance to talk to a neuro about my results, I can sound at least moderately intelligent. I’m thinking about contacting that last neuro I went to see — the one who treated me like I was looking for drugs, who has since apparently recanted their attitude towards me and offered to help me “in any way” they can. I may give them another chance — but next time, take someone I trust with me, and ask the neuro to just walk me through the high-level points of my MRI. There are some things that are grabbing my attention, and I would like a little bit of an explanation.

I really need someone to read it who knows how to interpret the orientation of the images. I think MRIs may give you a mirror image of a body part, so the left side of the picture is actually the right side. At least, that’s the impression I get from reading descriptions of MRIs that show clear anomalies on the left side… but the text talks about right-side issues. It gets confusing. One side of my brain is shaped a little differently than the other, and I’m not sure if my right side is lop-sided, or if it’s my left. I think it makes a difference, too, which side is varied from the “norm” — left and right sides have different functionality, or so I understand, and if I’ve got developmental issues with one side of my brain, then knowing about them might help me better understand and manage my own issues.

It could be that I’m on some wild goose chase, and that all the differences in my brain are in fact quite normal. But looking at my pictures and comparing them with other MRIs, my head is kind of lop-sided, and one side of my brain has a noticeably different angle than the other side — between the lower frontal/parietal lobes and the temporal lobe that sits beneath it. I’ve got some asymmetrical bulges, and in some places, one part of my brain looks like it’s been crowded by another part that is not shaped the same way as others’ normal pix. It is considerably wider and looks bigger than I’ve seen elsewhere, so that just makes me wonder.

I don’t think it’s a bad thing, having parts of my brain differently arranged than the norm. If anything, it’s probably an advantage. Even if my brain developed differently over the course of my life, it hasn’t completely stopped me from living my life, and no one would probably ever guess that it’s developmentally different. I’ve been far too successful in my life, far too resilient, far too capable, far too adaptable, far too effective, all across the board, for any sort of developmental differences to be a liability. If anything, my differences are a strength. And I’d never part with them. Not at all.

Looking at all these “normal MRI” pix, I have to wonder… What is normal, anyway? If you think about it, the chances of anyone turning out the same way as other people are just so slim. The human body is an amazingly intricate and sensitive system that can be impacted by unseen, invisible forces that we don’t recognize for a long time, if we recognize them at all. We’ve got billions and billions of cells constantly growing and changing and multiplying, we’ve got tons of distinct body parts, we’ve got so many different bodily functions, many of them invisible to us. And we’ve got not only our internal world but our external world to deal with and factor in. Some days, I’m amazed that the human race — or, for that matter, any living creature — makes it through a single day.

Lots can go wrong. Lots can change us. Lots can affect us and our development. But variations are what keep the human race viable. The healthiest living systems have a lot of variety in them, and I would expect that variations in brain development are critical for a healthy system, as well. Even if those variations appear to be “disabilities” or some other sort of rare deviation. The human brain is an amazing organ, and not only can it do things we cannot even begin to imagine possible, but it can also accommodate a whole lot of additional variations and bounce back from injuries, with neuroplasticity and remapping functions and other mechanisms we haven’t even begun to name. (I haven’t done a plug for The Brain That Changes Itself by Norman Doidge, in a few months, so I’ll mention it here — if you have doubts about the ability of the brain to adapt, then you should definitely check it out.)

So, even if my brain is developmentally anomalous, and even if it got broken along the way with those hits and falls and accidents, and even if it gets tired and overwhelmed and doesn’t know where it is, sometimes, it’s still mine. It’s what I have to work with. And so far, injuries and accidents notwithstanding, it’s still going strong.

Got a copy of my MRI on CD

Hallelujah! At last I have pictures of my brain.

And now it’s time to explore it.

I got the images on CD yesterday, but I had company last evening, and this is the first I’ve been able to take a look at the images. My computer keeps locking up on me, tho’, so I have to reboot every now and then. The GE program that displays the MRI slices apparently requires more power than my laptop has. Oh, well. At least I have the images and I can look at them.

Already, I’m seeing interesting things that might explain a thing or two with me. In addition to the TBI-caused difficulties (which aren’t immediately visible on the pictures, at least to me), it appears that my brain is not entirely symmetrical in every way.

Interesting…

I’ll write more later, when I have been able to digest this a bit more.

EEG and MRI are both normal!

Woo hoo!

I had a visit with my new neuro on Monday, and they tell me that my EEG and MRI both read as NORMAL.

There is no sign of a brain tumor.

There is no sign of MS.

There is no sign of degenerative disease.

I’m way symmetrical and looking good.

At last, I’ve got some actual testing and numbers to show for all this. Enough of the guesswork — I’ve got plenty of notes and detailed observations about my life, but no doctor apparently has the time or inclination to sort through them all.

Plus, with my over-the-top attention to detail and fixation on things that are experientially important (but probably medically insignificant), who knows if anything I’ve recorded is even any use to them at all?

God, I love minutiae. But it doesn’t love me 😉

Anyway, I’m trying really hard to stay positive through all this. I think that part of me would have liked to see at least a little bit of “variation” on my test results, so I have concrete proof that something unusual is “up” with me.

But this is actually one of the things that makes TBI such a conundrum for folks — both medical doctors and people who experience it. Your test results can come back looking great, your CAT scan, your MRI, and your EEG can all come back normal. But there are real issues hidden under the surface that emerge over time and with varying degrees of difficulty.

And those issues can look like seizures or mental illness or ADD or OCD or some of the other “alphabet” conditions that are swimming around out there.

Or, worst of all, they can be interpreted as a lack of will, being a “bad seed”, being “sinful”, or old-fashioned “character defects” that have little or nothing to do with character and have everything to do with the brain not behaving as it should.

And it can make you crazy. Personally, I wouldn’t be surprised to learn that mental illness can emerge as a result of the stress and strain of dealing with TBI… with or without knowing it.

Well, I would love to write more… and I really want to. But I’ve got to get ready for work and stop at the bank to close the business bank account I opened back before I realized that I wasn’t nearly as capable as I thought I was, and my MBTI was propelling me forward in life, fueled by anxiety, drive, aggression, and a deep-seated need to prove to myself and the world that I was really doing very well… when in fact, I wasn’t.

I know now that the complicated tasks involved with running a business are well beyond my broken brain. I may be able to get back some of my functionality with some speech/occupational therapy, but that’s a ways off in the futur. Right now, it’s time for me to let go of that unrealistic drive and work with the limitations I have. In a way, it’s a huge relief. There are plenty of other ways I can prove my self-worth to myself and the world that don’t involve adminstrative paperwork and filing quarterly taxes 😉

Note: This was cross-posted at Daily Strength

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.

Throwing nuts at the cheetah

I had a really troubling dream just before I woke up this morning.

I was walking through the woods with two friends of mine. It was almost like a jungle or rain forest – the air was very humid and the trees were huge and spaced apart, and the forest floor was quite open — not a lot of underbrush, but springy underfoot. We were walking along a wide path that was well-worn, and we were talking about this and that. I believe we were discussing possible dangers from big cats that had been seen in the area.

If I remember correctly, the woods had been cleared of all dangerous wild animals a while back, but some big animals had escaped and had returned to their habitat, so hikers were warned to be very careful and not engage them.

We walked and talked for a while, and I was picking up stones and nuts and old pieces of tropical fruit that had fallen from the trees. I was tossing them around, and my friends were getting irritated with me. They wanted me to stop, but I didn’t feel like talking with them. They were just running at the mouth, and I was getting overwhelmed with all the words.

We were passing by an open clearing that was raised up above the path, when we looked up and saw a cheetah sitting in the sunlight. It was a beautiful animal, so sleek and strong. It also looked very dangerous and wild. My friends said we should walk by it slowly and not bother it. They were both terrified of it.

I was thinking that I knew how to deal with a big cat. I’ve learned (for real, not only in the dream) that with big cats, if you come across them, you have to face them down. Make yourself as big as possible and stare them in the eye. You cannot show any fear, and you cannot turn your back on them, because when they hunt, they go for the back of their prey’s neck. If you do show them fear, or you turn your back to them, they instinctively attack and go for you. This is why joggers and cyclists are often attacked by mountain lions in California — they have their back turned to the animal or their heads are down, exposing the backs of their necks, so the big cats attack.

I wasn’t afraid of the big cat, and I felt like I needed to show it who was boss. I also felt a kind of rush from the imminent danger — Here was a cheetah! A big cat this close! We were in danger for our lives! I felt that familiar rush of adrenaline that sharpens my senses and pumps me up and makes me do things that I would not do under normal circumstances. Something in me surged with daring, and I took a nut I’d been holding and threw it at the cheetah. I felt a thrill of danger course through me, and I cursed myself for having thrown it at the cat. The nut bounced near it, and the animal flinched, and it looked like it was going to back off and leave us alone. My heart was pounding and my mind was calculating what I would do in response to it. I was watching it very, very carefully, to see what it would do, and for a few moments, it looked like the big cat was going to withdraw into the woods and leave us alone.

But then my friends got very frightened that I’d thrown the nut at the cat, and they started to freak out and panic. My one friend started to shake and quiver, and my other friend, who is a bit overweight and doesn’t move very quickly in real life, took off running down the trail. In my dream, I was thinking, “What are you doing?! You’re going to catch its attention! Why are you running from a cheetah? You can’t outrun it! You have to stare it down. You have to stand your ground!

I looked up at the big cat and saw it had suddenly spotted my friend. in an instant, it recovered its composure, sprang into action, and raced after my friend. It looked so beautiful in motion, all its sinews taut, its coat shining in the sunlight that filtered through the canopy above us. But my admiration was short-lived, as it caught up with my friend, grabbed them by the back of the neck, and started to run off with their body dangling from its jaw.

Frozen with horror for a moment, I took off running after the cheetah, yelling at the top of my lungs and willing myself to run faster. I was convinced I could catch it and wrestle my friend from its grip.

The big cat was very fast, though, and it was way ahead of me, with my friend’s body hanging from its jaws. I was horrified and mortified, and my other friend was screaming at me for throwing the nut at the cheetah and making it angry. In my head, I was trying to calculate how far the cheetah could get, carrying my friend’s heavy body, if I could catch up with it because it would be slowed down by the weight, and if I could get to it in time to save my friend. I suspected that my friend had been killed instantly, or that even if I did catch up, the cheetah would be eating them, so there wasn’t much point in my running after them.

Plus, I ran out of steam after a few hundred yards, and I had to stop. I was so upset at what had happened. On the one hand, I was upset with myself for throwing that nut, but I was also upset with my friend for not having better sense, and I was upset with the whole chain of events that was probably killing my friend.

I woke up very disturbed around 5:00, and I haven’t been able to get back to sleep.

I think that this dream has something to say about a lot of aspects of my life, these days. I have a lot of people around me who are very frightened for me, as I talk to them about my TBIs and the issues that go along with them. They’re like the friends in my dream, who just want to walk along quietly along a well-worn path in the woods, chatting about this and that, not really bothered by anything… cognizant that there are things amiss in the world, but not really eager to confront them.

There’s also a part of me that’s like that. I don’t want to be bothered by dangers in the woods. I want to just go along my merry way and not have to expend a lot of energy on things like dealing with large dangers that I come across.

But there’s also a part of me that gets bored with all that safe stuff, and I need to occupy myself. So I do things like picking up rocks and nuts and old pieces of fruit and tossing them around. I get bored pretty quickly, so I start casting about for new things to learn and do.

And sometimes my casting about uncovers big dangers along the way. Like this diagnostic imaging I’m going to have done — an MRI this weekend, and an EEG in another week or so. Who knows what will be uncovered as a result of that? Sometimes I cast about a bit too freely, and I can end up stirring up things that are unexpected and potentially dangerous… but are actually authentic pieces of my human experience.  (The interesting thing is that the cheetah in my dream actually belonged in the woods — it was its home, and it had just returned to its rightful place.)

Sometimes I cast about too carelessly, too — like tossing a nut at the cheetah. Or, I take a calculated risk and push the limits. In my dream, I didn’t just toss the nut at the cheetah for fun — I did it partly to show it that I meant business, and I wasn’t intimidated by it. I also wanted to scare it away. And it almost worked. But my friend with the weak nerves had to take off running — doing exactly the wrong thing, in that situation. They didn’t have the same information as I, apparently, and they let their fear get the best of them. And then all is lost.

This is pretty significant to me, in my real life experiences with others, because as I move forward, I’m going to have to educate the people around me about my condition(s) — TBI, etc. — so that they learn how to respond appropriately to the situation I’m in. I really don’t need them to freak out and get all worked up over things that A) we don’t know for sure, or B) are big and dangerous but are totally manageable with the right information and the right team of caregivers. I don’t need them to lose it and put themselves — or me — in danger. I need them to be cool, be present, be able to help in a substantive and constructive way.

As I go through this next phase of diagnostic testing — maybe it will show something, maybe it won’t — I need to keep my head on. I need to take care of myself and take things slowly, and not only know why I’m doing what I’m doing, but be clear with others why I’m doing it. Everybody needs to be in the loop, and that includes the parts of myself, too, that are prone to freak out and make poor choices out of fear, rather than knowledge and courage.

But at the same time, I also need to be cognizant of my tendency to court danger, as some kind of reflex, some inner/neuropsychological/biochemical need to sharpen and brighten mylife experience… to wake me up and keep me engaged in life. I need to be aware of my tendency to overstep my bounds, when I’m bored or tired or in need of some stimulation. I need to remember that, when it comes to taking on new challenges, I’m not always as smart as I think I am, and I’m not always up to the task of overcoming what I’m presented with. I can’t afford to forget that I rarely know as much as I need to know — either about myself or the situation I’m presented with. In my dream, I couldn’t chase down the cheetah, once it had hold of my friend. And I can’t always overcome my cognitive and behavioral issues as well as I’d like, once they take hold of me and get a ‘running start’ ahead of my logic and innate abilities.

When (not if) I meet a proverbial big cat on the path through my own “woods,” I need everyone with me — the parts inside and the people outside — to remain calm, make informed choices, and keep their heads. I need to focus on the basics — take care of my body and my mind and my spirit, with adequate rest and activities that feed and sustain me and build up my strength (not to mention common sense). And I need to be aware of my limits and not push them carelessly just because I need a thrill. I need to be aware that I do have a tendency (perhaps thanks to my PTSD) to court danger, just to feel awake and alive. And I need to remember that I’m much more use to my friends and family alive and healthy, than injured or dead. No matter how dangerous a situation may seem, the right information and the intention/willingness to intelligently proceed in the proper way can mean the difference between keeping on my path and making progress, and disaster.

Note to self: Get plenty of rest over the coming days and weeks. You’re going to need it, to do a decent job of handling all this.

At last, an MRI…

Good news on the neurologist front… finally! I had an initial visit with a new neuro who will actually listen to me. I guess three’s the charm. The first two I went to, seemed to have a lot invested in just dismissing my issues or making them out to be just stress-related, but this doc actually sat and listened to me list out my issues.

Or maybe I was just better prepared this time. I know I was a lot less nervous, this time around, and that probably helped. And I’ve gotten more accustomed to talking to doctors, since that first visit nearly a year ago. But this doc was actually interested in what I had to say, which was pretty amazing. And they let me use my notes.

We actually managed to cover a lot of territory in the hour we spent together, and by the time the visit was up, I had an appointment for an MRI this weekend, a call in to the EEG lab for another appointment in a couple of weeks, and I had a third follow-up appointment scheduled for late next month.

Getting the right help makes all the difference, I say.

And having the right insurance does, too.

If I’d known, a year or two ago, what I know now, I would have done the following differently:

Two years ago, I would have checked around with friends about different kinds of insurance, and I would have changed my carrier when I had the chance. I would have NOT gone with the company I’ve been with for over 10 years, which is fine if you’re healthy, but notorious for declining to cover out-of-the-ordinary things, like neuropsychological evaluations and neurological testing. I would have gone with another plan that is not nearly as stingy with adequate coverage and doesn’t treat you like a moocher for just wanting to stay alive.

A year ago, I would have been more aggressive about finding out which doctors really are in my hospital’s network, and I would have insisted on seeing them, no matter what my PCP’s receptionist told me about them not being in “the network”. God, but this has been a huge problem with me, and I still come across it — being told that I can’t see so-and-so, because they’re “not in the network” that’s covered by my health plan, when they really are.  See, since healthcare has become all consolidated, lots of hospitals have teamed up to form networks of healthcare providers. And if I need to find a specialist but there’s not one at my hospital, I need to find one who is in the wider network. The thing is, my hospital is really territorial about keeping patients within their own “walls” and keeping us from seeing people outside this hospital, even if they don’t have the kinds of specialists I need. So, whenever I have said to my PCP, “I need a referral to —–,” they have typically responded, “We have doctors like that here!”

The thing is, they don’t. For head injury, it can be very tricky, finding the right neuro. Some neuros are in bed with insurance companies and they focus on proving that people really aren’t injured all that badly, so the insurance company won’t have to cover their treatment. And others just don’t get the whole head injury thing. It’s very puzzling that professionally trained medically “qualified” doctors — especially neurologists — can’t get their heads around the idea that brain injuries (even mild ones) can carry serious cognitive-behavioral consequences that can wreck the life of even a “recovered” brain injury survivor… and that these injuries need to be constructively addressed for the sake of human dignity and basic functionality. Clearly, there’s a realy need for some substantive education, there. Either that, or the people saying, “Oh, those brain injured people will be just fine,” have sustained brain injuries, themselves, and that’s what they tell themselves to avoid the pain and tribulations of confronting their own limitations. Who can say?

Anyway, getting back to the referral thing, when I would tell my doc, “No, I need to see a TBI specialist, and this is the person I need to see,” (having done my homework and asked around), and they pushed back and told me that I had to stay inside “their network” I didn’t realize that their network actually includes a bunch of different hospitals in the greater metro area, and some of the hospitals are associated with excellent medical schools. It took me about five false starts, before I stumbled upon the information about how wide their network really is. And in the process, I canceled — or just didn’t make — a couple of appointments with neuros who came very highly recommended, but weren’t “in the network” — the immediate one, that is — but really were in the wider associated network.

Yes, it is confusing.

And over the past year, I would have spent a lot more time not taking NO for an answer, when it came to securing proper care for my unique condition. I can’t tell you how many times administrative staffers gave me the runaround, put me off, treated me like there was something wrong with me for wanting to get help for my hidden difficulties. I was just so flabbergasted that anyone would question my right to take care of myself and keep myself from being jobless, homeless, destitute, and dying before I absolutely had to. They couldn’t see my difficulties, because I hid them so very well, and it took a monumental effort to bypass my instinctual tendency to downplay my difficulties and actually say out loud that I needed some help. I hate being treated badly, when I’m in a vulnerable spot, and that’s what happened, time and time again. And it took me about a year to get the hang of talking back to the administrative staffers who were totally snowing me on the “covered network” details and actively denying me access to the help that was most appropriate to me, before I finally acquired the skill to say, “Actually, this specialist IS in your network, so don’t deny me the help I need with a specialist who knows what they’re talking about.”

I also would have challenged those other neuros on their decisions to not order testing for me. The times when the docs said, “I don’t think you need an MRI or an EEG,” I would have said, “Is that you talking, or the insurance company? How much do they pay you to say that?” I would have really given them hell about just brushing me off, and I would have challenged them on their decisions and I would have called them on it.

Apparently, as a friend of mine who used to be in medicine told me the other day, it’s common knowledge that doctors are compensated by insurance companies for not ordering testing like MRIs and EEGs. Yes, docs get a kickback from insurers for not doing their jobs — or a least doing less of their jobs than they ‘have’ to.

This just floors me. I guess I’d have to show up close to dead and hooked up to a machine cranking out objective metrics for clinical analysis, in order to be taken seriously, but you know what, I’m just not going there. I’m a lively, vibrant, awake, engaged human being, and I actually like to live. So why would I subject myself to that sort of experience, just to make some doctor/insurance company happy? It never occurred to me that I was here to do their bidding. Funny, I thought it was the other way around. But then, I have sustained multiple brain injuries, so that probably has impacted my capacity for cynical cognitive shortcuts.

Anyway, now I know these few simple but critical things, and I can now act on that knowledge. Speaking of acting on knowledge, I think I’ll pay a visit to the hospital administration and discuss this disturbing tendency with them. I understand that they are trying to stay solvent, and they have to do what they have to do, to keep their books balanced, but actively discouraging people from seeking out proper care is just unconscionable. And someone needs to be made aware of this. I’m not asking them to send everyone out to other providers for help — just don’t actively prevent those of us with specific, unique, highly specialized conditions from getting the help we really, truly need.

That being said, I’m going to read up on MRI’s now, and prepare myself mentally for my appointment this weekend. I’m actually very excited to be going — I love machines, and the whole magnetic resonance imaging thing gives me a thrill. I don’t care if it’s loud, I don’t care if it takes all day. I’m looking forward to A) getting a close-up look at this machine, and B) actually getting some answers about what’s going on in my head — answers that are NOT based on speculation and extrapolation and deduction, but honest-to-God pictures.

I can’t wait!