I just confirmed my neuro follow-up appointment for tomorrow. I had gotten a call from them on Saturday, confirming me for 10:20 a.m. tomorrow morning, but I could have sworn I made it for 2:20 p.m.
So, I called them back this morning, and yes, it is at 2:20 p.m.
2:20 on the 22nd of the month. Gotta play those numbers 🙂
Anyway, after that appointment I’m also meeting with my new neuropsych. I did a little research on them over the weekend, and it turns out that they’re about 15 years younger than I (they got their B.A. in 2001 – which is really hard to believe… but there it is). They’ve had their Ph.D. less than 10 years, and they’ve been primarily engaged in group practice work, in an academic lab, so this whole individual thing may be new to them. I know they have worked directly with a variety of different kinds of folks (and they did their obligatory VA training), so it will be interesting seeing how this goes.
I have high hopes.
In any case, it will be great to be getting back to seeing someone on Tuesday evenings. Neuro rehab is really the central organizing theme of my life — improving myself, better understanding my brain, organizing my thoughts, and also figuring out how to deal with my spouse as they decline… it’s all part of it. And it helps to have a working relationship with someone who is a professional — no personal strings attached, no implied reciprocity, no emotional entanglements… just someone to talk things through with, who has an expert outlook on it all.
So, I’m gathering my thoughts for tomorrow. I need to take my bloodwork numbers from the past years, so they have something to compare to, and I need to collect my questions about my MRI images.
There’s a lot there I’d like explained. And this neuro is the only person I know who can explain it for me.
So, tomorrow is a new day. Literally. And it feels pretty danged good to be starting something fresh.
My watershed week continues. It’s been a full week — I had to get my furnace serviced on Monday, because the pump that circulates the hot water through the registers was broken and overheating, which is why it was shutting down after running for a few minutes at a time.
Wednesday, I had another training to be a tour guide at a local park. We’ve got a few days allocated at work each year to donate to a cause of our choice — I chose some outdoor tour guide work at a place I love, which was also on the list for volunteering. It’s a significant step for me, because I have to study up on the park, its history, and all the wildlife and plant life there, so I can tell people about it. And then I’ll need to train with another seasoned tour guide, to learn the ropes and understand how best to talk with people.
I decided to do this because I need to get out and be more social with people, but I don’t do well in unstructured situations. I don’t always pick up on people’s social clues about when to talk — or when to stop — so it gets awkward. But if it’s in a structured setting, and there’s a time limit and I can follow a sort of “script”, I’m good.
Wednesday was the second of three trainings, and even though the weather was dicey, I still went, and I’m glad I did. It seems as though there are a number of folks exactly like me there — nature nerds who love to learn new things and share them with others.
Yesterday, I had my appointment with the new neurologist, and it went even better than I’d hoped. These folks are really on top of things — and even better, when we talked about the diagnostics and the imaging I’d had before, they didn’t even bother looking at the MRIs. Because for someone with my history of brain injury, they are not the right kind of MRIs. They told me that DTI is really the only way they can look at the actual connections in my brain — the axonal connections (signs of past shearing), as well as possible micro-bleeds.
I am so excited – it’s taking a monumental effort to resist typing this in all caps.
But I’ll resist, out of courtesy.
This is an incredible relief. Because it signals that these people actually understand what the hell is at the root of my issues. And they also know that a standard-issue MRI is not going to show them what they need to know. I will need to travel to the one facility in the extended area that has the equipment to do the DTI-MRI, but I’m more than willing to do that. Heck, I’d walk there, if need be. I had been hoping that something like this might happen for me. And in fact, I was thinking of getting the imaging done myself, while I still have good insurance, and then hiring a consulting doctor/radiologist to interpret the findings for me. I know of some resources for finding doctors/radiologists online who can interpret test results for you for a pretty low sum. At diagnose.me I paid $50 to have a radiologist from Vienna to take a look at my two prior MRIs and do a comparative analysis and tell me what they saw. So, I could cobble the steps together and use them again, if need be.
But now I don’t have to do that, and I actually have a very experienced neurologist (who specializes in sports) who will look at all the imaging themself and interpret the results for themself. Imagine that. Even though I had to take half a day off work and drive a ways through traffic and bad weather, it was well worth it. I’d do it all over again, in a heartbeat.
This DTI-MRI and the other tests I’ll be taking — for my autonomic nervous system function, as well as an EEG to check out how the electricity is flowing in my brain — might actually be my chance to figure out just what the hell is going on with me, and get past all the psychobabble that abounds. All the best guesses, based on personal observation and interpretation, make me nuts. (That’s the engineer in me talking.) I need hard data, numbers, actual images, to understand things — and so does everyone else. When you rely on human interpretation of signs and symptoms to assess someone’s difficulties, you open yourself up to way too much margin for error.
That’s one of my chief complaints with my neuropsych. Although they mean well, and they have some pretty amazing domain experience, and they have helped me tremendously, their interpretations of what’s going on with me have been an on-and-off source of aggravation. If they weren’t the only person I have regular access to, who is a highly educated professional who can talk at length about things other than politics, Game of Thrones, and Kardashians, I probably would have dropped them some time ago. But when I meet with them, I get to exercise my mind, as well as my brain, so it’s been very useful in that respect. They’re smart enough to know that I’ve done the lion’s share of my recovery, myself, so there’s no illusion about them having a Svengali-like hold on my poor little mind (as some therapists have fancied themselves). At the same time, though, their cultural biases really come through.
They interpret my experience along their own lines — as someone who grew up in a very secular, culturally homogeneous urban area, surrounded by professionals, and living a very entitled life. Whereas, my experience is that of growing up in both a racially mixed, working class urban area, and a deeply religious rural area where the optometrist, dentist, and doctor were the only professionals you ran into on a regular basis — and with them, maybe a handful of times a year. The conceptual gaps between our worlds are long, wide, and deep, but they don’t seem to realize it. And when I’ve tried to raise that as an issue, they flatly denied that it could play a role.
News flash – it does play a role. A huge one.
But that’s going to be changing in a month, because they’re leaving. And today, I’m meeting with their “replacement” — a neuropsych who comes highly recommended. This could be good, because this new NP is not from here. They’re an immigrant from Eastern Europe, and they don’t speak English as a first language. That’s good, because while they are highly educated and they teach at a university in a nearby state, they probably won’t take as much for granted, as my old neuropsych. I’ve lived overseas and also worked a lot with folks from other parts of the world, and I actually find it easier to talk to people who come from a different place and speak a different language.
When you don’t assume that you know, you pay attention more. When you realized that you could be misinterpreting what someone is saying, you listen more closely. It was like that when I was living in Europe, 30 years ago. And that’s how things were when I had to travel to Europe in my old job, 3 years back.
So, that third Big Event is happening today, and I’m pretty stoked about it. I’m also stoked about finding some very cool new reading — and that I actually can read it.
Five years ago, I had no confidence that this would ever be the case. I took what I could get, and I made the best of it. But this turn of events now is just huge for me. It’s like a new chapter is turning over in the book of my life.
Will wonders never cease… I have an appointment with a neurologist’s office in a little over three weeks.
And they look like a good one. They come very highly recommended by the neuro I was seeing before, and they also specialize in sports neurology and TBI. That’s exactly what I was hoping for, and I didn’t even specifically articulate it to the folks who have been helping me look around.
It’s important to me to work with someone who understands an athlete’s mentality, because that’s what I’ve always had — and I continue to. If anything, I’m more of an endurance athlete than I was when I was running cross-country and track in high school. Every day is an endurance test for me, and I have to keep myself fit, to keep on.
I have to see a nurse practitioner before I see the neurologist. This might be to make sure I’m not a malingerer or just looking for drugs. I’m sure they also want to identify exactly what the deal is with me, because TBI patients (and other patients as well) can be a challenge to “pin down” in terms of issues and treatable symptoms.
Sometimes people just want someone to talk to. That’s not me. I just want an expert to consult with me, using their professional experience to help me with the migraines, potentially the sensory issues, and most of all, help me stay upright — and keep from getting yet another brain injury from a fall.
At this point in my life, I’d just settle for the last one. I don’t like going the meds route with my migraines. I’ve found that cutting out the triggers of chocolate and too much coffee, as well as drinking enough water will keep them at bay. And while the sensory issues (especially touch being painful) is disruptive and is a strain on my marriage, I’ve been living with it for nearly 50 years, and it’s not posing an imminent danger to me. Falling is the biggest danger I’m dealing with, and it’s ongoing. I’ve nearly fallen down stairs a number of times, over the past couple of years, and I can’t afford to have that happen yet again. So let’s focus on that, why don’t we.
I’m pretty excited about the prospect of having a decent neurologist.
And now I have my next-steps:
Contact all the places where I had imaging done and get copies. Fortunately, they are in the same healthcare system as the hospital where I had my MRI and EEG in 2007, so they can probably just pull it up on their system. I also need to contact the hospital where I had my most recent MRI and neuro consult, and have them send me my records. Or, better yet, since their systems are pretty much a shambles, and I have no confidence that they’d be able to get my materials to me on time… I’ll just go pick them up.
My neuropsych is writing up an report on my issues and progress, as well as recommendations and warnings on any meds that might be prescribed. That’s important, because there are certain meds I cannot have, because they screw with the systems that have already been compromised by multiple brain injuries. Meclizine, which is a common medication prescribed for nausea and vertigo, has been prescribed to me by a PCP in the past — and it made me feel drugged. It was also recommended to me by an actual neurologist (who should know better considering my history of brain injury), but I told them I couldn’t have it. So, I had to save myself.
Collect my thoughts and narrow down my discussions to the main issues. Not allof them. The nurse practitioner I’m going to see will do an intake, first. I think I’m going to have to schedule a later appointment for the neuro, proper, but with the NP, I need to be clear and concise, as well. So, I’ll practice my spiel and make sure I don’t range too far afield. I’ll also practice not crying, because that tends to happen when people show me too much compassion. It happened at the last neuro, and I hate it. It makes me look like an emotional wreck, or someone who’s trying to get attention. I need people to stay objective and scientific, so I don’t lose my sh*t.
Lastly, and most importantly, I need to be realistic. I’m nobody to this neuro, really. I’m just another patient in a sea of faces, who is highly functional in many ways and less in need of help than probably most of the other people they see. I’m not one of these high-value patients — young, with their life ahead of them, and a bright, productive future on the horizon, if they can only resolve their neurological issues. I’m not a top-1% professional with a slew of letters after my name. I’m a 50-year-old techie who doesn’t want to fall down and get hurt again. Basically, I just don’t want to get hurt and end up destitute, homeless, or dependent on the system. If I fall again, that might end up happening. They have no reason to pay any special heed to me, and while a true professional can be expected to treat all patients with the same respect and regard, practically speaking, that doesn’t always happen, so I can’t let it get to me, if it doesn’t. Maybe they’ll be able to help me, maybe they won’t. I’ll stick with that one thing — not falling down — and not take up a lot of their time. And I’ll keep on with my life.
This whole diagnosis and treatment thing makes me nuts, if I think about it too much. It’s really hard for me to A) figure out exactly what the realissues are with me, and B) articulate them in a manner that has any meaning for doctors. I have an exhaustive (and exhausting) understanding of all my issues, as well as the subtle interconnections between each. But it’s hard for me to articulate it all and make it mean anything to a medical provider. The current medical system is inclined toward that degree of subtlety. There’s just no time. And if I let myself off the leash and just talk, I usually end up looking like a crazy OCD attention-seeker.
I’ve got to keep myself in check.
Of course, there’s always the danger that appearing “too functional” will work against me. They might just decide that I don’t have any issues at all, and I’m just wasting their time.
At the worst, I’ll just be back where I am now… figuring things out on my own, and piecing things together as best I can.
And that might not be such a bad thing, after all. Only time will tell.
This is an extension of the piece I wrote years ago (January, 2011), called “After concussion – you’re not stupid, it just feels that way“. I’m writing this after seeing a physiatrist for a follow-up appointment regarding neck & shoulder pain/stiffness and tingling and weakness in my left hand and arm. They had given me a prescription for a physical therapist to get some help, but I never got PT help, because:
Carving time out of my schedule is a challenge. I already have two standing appointments after work, each week, and a third (and sometimes a fourth) usually shows up, which doesn’t leave me enough time to rest.
The one PT who I am interested in seeing has an office a good hour from my home, which not only makes it tough to find the time, but it also threatens to wipe out any benefits I get from them, while I’m driving home.
It’s hard for me to explain what’s going on with me, because I get turned around – especially when I’m tired, and my symptoms shift and change. It’s hard for me to A) remember from one day to the next how I’ve been feeling, B) track how I’m feeling without it being disruptive, and C) put into words the impact of my issues. Not being able to explain — especially to people who do not know me, and who do not know how to parse out all the information in a meaningful way… it’s just a waste of time.
The PTs I’ve worked with in the past have had no clue (I mean, NO CLUE) what to do with me, when they found out about my head and neck injuries. They either treated me like I was mentally deficient, or they got so in a tizzy about my different injuries and whole host of aches and pains and issues, that they were no use to me at all. They were so obsessed with being careful, that they achieved nothing at all.And what they showed me was stuff I already knew how to do.
So, no, I didn’t follow up with a PT, and I told the doctor a few of the points above. I should have written it down, but I didn’t get to it.
The doc was a little taken aback, probably because I had seemed so compliant and cooperative when we’d met. I explained to them that I hadn’t had good experiences with PTs, and anyway, I thought I’d try to fix the issue myself with some light exercises… which has worked. Strengthening my trapezius muscles in a specific way and also stretching my neck has resolved my issues. That, and being determined to not get hooked into a healthcare system that is A) clueless about me, and B) too impatient to be of much help to me.
In the end, we parted ways with them telling me that I was going to be fine and I guess trying to be encouraging. That’s fine, but it was also a bit infuriating, because (cover your ears and/or close your eyes) Jesus Fucking Christ They Treated Me Like A Goddamned Simple-Minded Idiot. They talked slowly and said “Good job!” a lot, like I was a goddamned puppy learning a new trick. They were complementary towards me for taking things into my own hands and being pro-active, but the way they did it seemed forced, like they were making an extra effort to accommodate my “disability”.
I do not havea disability. I have a history of injuries that have changed the ways I process information, and just because I’m struggling to find the right words — “X-ray”… “arthritis”… “traps” — doesn’t mean I’m not parsing all the information as well as the next person. My brain works differently — not worse. But every time I stopped to find a word or I had to work at putting thoughts into a sentence, they got a little more “accommodating” and remedial with the way they interacted with me. The worst thing was when I started to tear up over explaining why it’s hard for me to get help.When I get angry or frustrated, I tend to cry. And you’re right, if you’re thinking “How inconvenient… How infuriating.” It is. And that makes me even more prone to tears. Arrrrgggghhhh!!!!! &(*$^%#*!!!!
I’m sure they were trying to be compassionate and empathetic and whatever, but their total affect came across like they had to talk more slowly and put ideas into small words and lower their communication level for the simpleton in the room (that would be me). It seemed like they thought that I was less intelligent and less capable of processing information due to my history of TBI, so they had to talk to me like a 5th grader. Plus, they kept saying that everything that’s happening to me, is just because of my getting older. They said that a lot, last time I saw them. And they kept saying it with this air of “professional resignation”, like that’s just how it is, and I was a mentally deficient person who was getting all paranoid with bad thought habits, thanks to my history of head injury.
The thing is, my 50 years on the planet might be a factor, but my family members regularly live well into their 90s and past 100, so I’ve got another 50 years ahead of me. At least. It’s medically possible now to live till 120, so we’re probably looking at 150 being possible, by the time I near that. That’s my plan, and all this talk about “well, that’s just what happens when you get old” is not helpful to my plan. It’s just a bit resigned. Pessimistic. Cynical. None of the things that actually help me… or are consistent with my own attitude towards life and living it to its fullest.
Now, if I were going to see this doctor regularly for an extended period of time, I could do something about this. They would get to know me. They would change their mind about what “has” to happen as we grow older. They would realize that they don’t have to give me me special treatment – they just need to have a little patience while my brain coughs up the right word. And I’d be able to educate them about the ways in which I am strong – so strong – instead of just what they see with the verbal issues.
But I’m never going to see them again. I can deal with my issues on my own. I don’t need to be constantly told to adjust my expectations down, thanks to the inevitable march of time. And call me crazy, but adding an hour of driving, breaking up my work day, and spending $40 a pop to go see someone who is just going to talk down to me, no matter how helpful they’re trying to be… seems like a waste of time. It was a great lesson to learn — next time I’m not going to bother going back again, if I’m actually not having any more issues. Consider the lesson learned.
It’s best that I just steer clear.
And while I’ll never have to deal with them again, most likely, this is the thing that makes me NUTSabout people and their cognitive prejudices. If you’ve got difficulties putting words together verbally, people assume you’re less intelligent or are “slow”. If you have little tics or fidgets, they think there’s something wrong with you. If you don’t answer them immediately with a definitive reply, they take you for weak-minded and indecisive, and they sometimes get angry to boot. If you get tired and distracted and lose track of what they’re talking about, they think you’re not interested in what they’re saying, and they get angry. If you can’t remember things that happened only a few minutes ago, they think you’ve got Alzheimer’s or some other degenerative condition that’s making you lose your mind, and they start “helping” you remember things.
Doctors are just as susceptible. They are human, after all, and medical education doesn’t always impart insight or interpersonal clue-fulness. Maybe this physiatrist has seen other folks with concussion / TBI, and they needed the extra help. But it’s really demeaning to treat people in that way — like children, or developmentally delayed “dearies” who just need love and understanding – not cold, hard facts.
For as long as I can remember, my parents have treated me like I was “special”. Like my inability to remember things marked me as less-than. Like my losing track of things and getting lost with directions meant I was functionally impaired.
I am not an idiot. I am not simple-minded. I am not intellectually impaired.
I have a handful of issues that get a lot worse when I am tired, in unfamiliar conditions, or under pressure. I have a handful of issues that I have learned to work around. I don’t need anyone’s condescension or “help”. I just need people to cut me a break, be polite, and treat me professionally. I need them to treat me like the adult I am, and with the respect I deserve.
Since I’ve been down with the flu this week, I’ve had a lot of time to think about how different sorts of people get — and respond to — different sorts of treatment. This can be for flu… or it can be for traumatic brain injury / concussion. The basic paradigm is the same, across the board, I believe. And it’s something I think we really need to consider, when it comes to treating TBI / concussion.
One thing I have noticed, over the course of my life, is how I am often at odds with my doctors over being self-sufficient… to the point of being considered a “risk taker” with regards to my health. This includes doctors, dentists, neuropsychologists, therapists, nurses, etc. The thing they don’t seem to understand, is that this is how my whole family is – has always been.
See, here’s the deal – even though I have spent half my life in cities and half in very rural settings, I come from a rural family. I mean, frontier-rural — prairie rural. My great-great-great grandparents (on both sides of the family) were some of the “sod-busters” who moved out into the newly opened prairie (my apologies to the Native folks who were driven off — I am really deeply sorry for what was done, and it’s a little horrifying to me that my ancestors benefited from your terrible losses).
Before them, too, my ancestors were adventurers and explorers who traveled far and wide throughout the European world, and lived on the margins of “mainstream” society. They were self-sufficient. Because they had to be. Same with my great-great-great grandparents. They lived miles from the nearest doctor. He was usually a day’s wagon ride away. If you fell or got sick, you had to make do, until he got there, or for as long as you could.
Sometimes you couldn’t even get a doctor.
Given this fact of life, my family — both sides of them — had to develop a self-reliant quality that would keep them alive and keep them from depending too greatly on professional help for their daily needs.
Contrast this with folks in cities or other developed areas, where you can get to professional help within hours, if not minutes. In a city, or in a developed community, the challenge is not keeping yourself alive, it is learning to communicate the details of your ailment/need to the professional who can help you.
Now, let’s fast-forward through time to today — when I am still as independent as anyone in my family, and I look for solutions of my own to issues I face. My doctors/providers approach me at times as though I am “hostile” to their help, when all I’m doing is having the same orientation of independence that folks in the middle of nowhere have to have. I also live at some distance from the nearest hospital I trust implicitly, so I have to choose carefully when and where I get my medical care.
It’s not that I am uncooperative or hostile. I am rural at heart. Self-sufficient by nature. I am my great-great-great grandparents’ offspring (aside from the Native antagonism), and that’s how I stay alive. It’s how I always have, and it’s how I really feel I have to be, to get by in the world. But when I try to communicate with my doctor, they seem to think that I am being intentionally difficult, simply by needing to stand on my own when I can. I have to be able to function without leaning on everyone around me — which is the way that you can be when you’re in an urban environment; social interaction and interdependency is built into your dna. I’m not knocking leaning on others. If you can do it reliably, then fine. But with me, depending on others can very well shorten my life needlessly, if I disregard my own judgment an the signs I see about my own situation.
The other piece of this, which I think needs to be factored into adequate TBI / concussion care, is class. I’m not talking about taste and money, but the way in which you work and live your life. Working class folks have different ways of interacting with authority figures, than professional class folks do. I think Malcom Gladwell made a really going point of it in his book “Outliers” which is about people who do exceptionally well in life. He points out that people in professional classes are taught (sometimes from a very young age, if they’re born into it) to interact with “authority” as peers, rather than subordinates, while working class folks expect authorities to offer them guidance and direction and clear instructions on what to do.
When you “occupy” a certain class, it’s like you occupy a certain “geography” – and I would wager to say that being part of the professional class is like being urban/suburban in nature. You have more money, you have more access to other professionals (by social association as well as perks and benefits with work, etc), and you are more interdependent with others, from service providers who care for your house and your property and your money and your health (in all its manifestations).
When you’re working class, however, your world is different. The scenery is different. You have different types of friends and acquaintances, and different levels of access to different aspects of life. And you have to be a lot more self-sufficient, just as you do when you’re rural. You don’t have the same amount of money that gives you instant access to certain services and assistance, so you either have to do without, improvise, or find alternatives. That applies to every aspect of life, including health care.
And here is the big disconnect I see between the kind of help that’s offered to TBI / concussion survivors and the providers who seek to help us. At least, this has been my experience… The doctors I know and have worked with over the years have often come from urban or suburban backgrounds. And they obviously are members of the professional class. As such, even if they grew up in urban surroundings, they are now part of a class that is by its nature geared towards interacting with other professional class members as peers, rather than as superiors/subordinates. So, when folks come to them asking for help, and those folks are from working class or rural backgrounds, the docs don’t always ‘get’ what’s expected of them in that relationship. Either that, or the docs aren’t willing to meet their patients half-way with language and communication that bridges the gaps in class and background.
A prime example is my own experience with my PCP – I have a great doc, who it took years for me to find. They have my best interests at heart, and they are very personable towards me. They clearly want me to be well, and we have had some great exchanges. But they just don’t get my need for self-sufficiency. And they seem to think that my wish to be independent and self-sufficient is a sign of distrust of them and/or our relationship. They see my reluctance to get flu shots as being stubborn, when my real rationale is that it’s just plain unhealthy for a human body to not build up its own resistance to heavy-duty infection (as unpleasant as the building up process may be). They interpret my need to call the shots in my own life and make my own health decisions, as disrespectful of their expertise, when it’s just me exercising the very essential mental muscles, so that I can have some say in my own destiny. It’s a little problematic for our relationship, and I need to do some clearing up, when I get a chance.
I may get this chance on Friday. Or not. But whether I do or not, it’s always going to be a factor with them. On Friday, I hope to ask them if they were raised in a city or in the countryside. That should shed a lot of light on the dynamics. We’ll see how that turns out.
In any case, I think especially when it comes to post-TBI care (be it medical or ongoing rehab), the socio-economic background of the individuals involved needs to be factored in and adapted to. This is something that every medical school should teach, in my opinion, because teaching young doctors to realize the differences between individuals based on class and where they live, could truly transform the doctor-patient relationship – especially with regard to such gray areas as concussion / TBI.
Specifically with regard to concussion / TBI, I think it would make sense if there were different ways of instructing Emergency Room visitors to handle TBI recovery. Instructions should be phrased differently, based on the person — not over-simplified “d’oh” language for hayseeds, but plain English for those who need that, versus more technical explanations for those who need that. The English language offers many different options. We should use them all, in explaining proper TBI care to patients who desperately need it.
Beyond immediate medical response and care, I’m sure there are elements of rehab that could also be modified to accommodate different classes and geographies, but I don’t know enough about them to speak to them. All I really know about is dealing with my own doc who seems to think they know enough about TBI and don’t need to factor that into my overall healthcare, let alone discuss the impact it might have in individual circumstances. TBI and the issues that arise from it touch on every single aspect of my life, yet my doctor just seems to dismiss it. And when I bring it up, they just get nervous — perhaps because it’s not something they can fix with a pill or a prescription. And it’s also not necessarily something they can bill insurance for. If they can’t bill for something, they’re not going to spend the time. It’s not that they’re negligent — they are under pressure from their practice to log truly billable hours. I’ve seen that first-hand, and it’s not pretty.
I think, in the end, there are significant aspects of our lives which are not getting due respect, because they’re concealed beneath the layers of socio-economic bias that separate so many of us. And nowhere is it more visible, than in healthcare — particularly in care for those who have sustained TBI / concussion. People who do rough, dangerous jobs stand a greater chance of sustaining a traumatic brain injury, than those who sit behind a desk all day. And those who do rough, dangerous jobs, tend to not have Ph.D. after their names.
What’s more, out in the country where you’re living a bit closer to Mother Nature than when you’re in town, you’re more exposed to the kinds of events that will get you hit on the head. Farming accidents. Building accidents. Hunting accidents. ATV accidents. Falls. Tornadoes. Storms. Floods. Sinkholes. The list goes on. And if ever there were a need, it’s for people with the power and influence to provide advanced medical care, to make it more accessible to those without the letters after their names and the zeroes a the end of their salaries.
I’m not asking for hand-outs or charity. I’m just asking for common sense. In the end, access to quality care isn’t just about proximity and availability, it’s also about interpretation and understanding.
Sometimes, understanding is what we need the most.
Just kidding — that’s my attempt at being facetious and draw attention to some of the absolute absurdity that the DSM-IV once again brings our way.
I’ve heard people talk about how DSM diagnostics are decided — apparently there’s a committee of powerful, politically connected psychiatry insiders who all get together in a room behind closed doors (literally) and bargain to see who gets to define which syndrome or disorder. Hmmmm… Sounds dicey to me.
And yet, their pronouncements rule the day. And they hold the keys to the castle with the insurance companies, as well as how we define and understand ourselves, based on “professional opinion”. Their little jockeying-for-position games behind closed doors can — and do — ruin lives. Not least by way of coming up with bogus definitions that clueless therapists and counselors and healthcare providers rely upon to conceptualize conditions and treatments.
My reading of the ONF guidelines for persistent mTBI symptoms has hit a speed bump. My initial enthusiasm has been quickly cooled — as it often is. I guess I had a bit of an impulse control problem, when I started reading their guidelines. I was so excited that someone had put together something comprehensive for healthcare providers, which actually focused on long-term issues of mild traumatic brain injury. Fortunately or not, my double-take happened pretty early on — around page 7, when they started to go on about DSM-IV diagnoses for PCS and PCD.
Apparently, PCS is a syndrome where you just *think* you’ve got a problem. There’s been no neuropsychological testing to prove it (though actually getting access to that testing can be all but impossible, and even when you do get tested, whether or not you get someone good is all too often a coin-toss).
Now PCD, that’s a real problem, being verified by neuropsychological testing and evidence of “significant impairment in social or occupational functioning”. My next question is, who gets to decide what constitutes “significant impairment”? If my post-TBI symptoms persist in making me utterly miserable for years after the fact, but I can still hold down a job and carry on a semblance of a conversation, does that mean I’m not really that bad off? (This really brings to the fore the need for real, solid, in-person education, like the “You Look Great” videos and book by John C Byler. Check them out, if you can — the YouTube videos, especially.)
What’s more, the DSM-IV PCD/PCS definitions talk about loss of consciousness being a requirement for concussion. Please take note, doctors and patients alike:
You Do Not Have To Lose Consciousness To Sustain A Concussion
A temporary disruption of consciousness will do just fine, thank you. Fogginess, dizziness, feeling out of it… that can indicate concussion, also.
Anyway, considering these guidelines from the ONF are intended for doctors who are diagnosing and treating concussion/mildTBI folks, this inclusion of DSM information really worries me. It’s so obviously slanted towards psychology, when traumatic brain injury’s nature is so physiological in nature. The separation between brain and body that the psych mainstream insists on maintaining is a little bit creepy, actually. Here are all these people walking around in bodies, living physical lives, dealing with people who have genuine physiological bases for their state of mind, and yet magically the body doesn’t matter. It’s like the psychiatric diagnosis-definers of the world have problems with their own physical realities, so they expect everyone else to be as divided and dismissive as they are.
How is it possible that a whole scientific field (though Sheldon from Big Bang Theory would probably dispute the scientific-ness of psychology/psychiatry) can discount half (or even more) of the human experience? It’s sad. And pretty awful that so many impaired people have so much power.
In shutting out the physical, they draw much of what they purport into question. Their guidelines and diagnoses patently discount a massive chunk of contributory information. How can you take them seriously, when they make claims that post-concussive issues are “subjective”? As though it’s all in our heads and we’re just looking for attention. And yet, they’re the ones making the rules and deciding whether or not we get care — and what kind we get. So, we have to take them seriously. As a heart attack.
The DSM definition of PCS — which includes “Subjective concentration, memory, or intellectual difficulties without neuropsychological evidence of marked impairment” and “Preoccupation with above symptoms and fear of brain damage with hypochondriacal concern and adoption of sick role” has Münchausen syndrome written all over it, and seems to me to breed dismissal, neglect, and opens the door to a whole course of “treatment” for a psychological condition that doesn’t even exist.
Of course, it wouldn’t be the first time the psychiatric industry were playing fast and loose with other people’s lives, in hopes of getting people “back to normal”. Talk to historians (or check Google) about marginalized populations , like Native Americans, African-Americans, non-compliant women, gay people, and just about anybody who has been considered “abnormal” by mainstream society, and you’ll find generations of evidence of psychiatry being used to further the dominant paradigm, and decide who’s fit to belong and who’s not.
In the past couple of generations, with the rise of pharmaceutical “solutions” to mental health issues, psychiatry has been used tons of times to further the profits of big pharma, and their influence reaches into every aspect of our lives. It would seem at times as though psychiatry and psychology were just the vetting mechanisms to identify which drug should be prescribed — not if any drugs are really necessary at all.
And this is what gets me the most. Because if you’re saying that Post-Concussive Syndrome is a “subjective”, “hypochondriacal” psychological condition, and you reach for the prescription pad, you may very well be headed down the wrong path entirely. TBI makes a lot of people react completely opposite to drugs than the rest of the population, and it can make you intensely sensitive to even minor doses, which not a lot of people realize.
Another thing that worries me about including DSM stuff early in the ONF guidelines is that if docs read that up front, they could be led to think that, “Well, it’s not a REAL problem that I can address — it’s actually something that’s in their head and they’re better off seeing a counselor. Furthermore, if I allow this patient to entertain fantasies about their being sick, I’m just encouraging their malingering and rewarding their Münchausen syndrome. And I don’t want to do that.” And they may ship ’em off to psychiatrists who whip out that prescription pad and send their new charges straight to the fires of aggravated TBI symptoms – probably without even realizing it.
And off we go down the road to hell… With clueless doctors staying that way, and TBI survivors continuing to struggle and fall deeper and deeper into the hole of no-answers, no-options, no-hope.
So, there’s my speed bump meditation for the day on the ONF guidelines. As always, with mild TBI, it’s caveat emptor, when it comes to getting good information. Buyer Beware — someone with either an agenda… or misplaced loyalties/trust… or a need to take shortcuts… or a sense of extreme urgency (or a combination of all of the above) might be playing fast and loose with the facts of the case, for their own gain and profit — not yours.
Which is why we survvrors and those who care about TBI survivors need to keep vigilant and guard ourselves against unmitigated nonesense. Fortunately (for me, anyway), my constant restlessness and TBI-enhanced anxiety and vigilance keeps me on my toes.
Apparently, they’re not the same. I had thought they were interchangeable, but I guess they’re not.
Diagnostic Criteria for Post-Concussion Syndrome (ICD-10)
A. History of head trauma with loss of consciousness preceding symptom onset by a maximum of 4 weeks.
B. Symptoms in 3 or more of the following symptom categories:
Subjective concentration, memory, or intellectual difficulties without neuropsychological evidence of marked impairment
Reduced alcohol tolerance
Preoccupation with above symptoms and fear of brain damage with hypochondriacal concern and adoption of sick role
Diagnostic Criteria for Postconcussional Disorder (DSM-IV)
A. A history of head trauma that has caused significant cerebral concussion.
Note: The manifestations of concussion include loss of consciousness, posttraumatic amnesia, and less commonly, posttraumatic onset of seizures. The specific method of defining this criterion needs to be established by further research.
B. Evidence from neuropsychological testing or quantified cognitive assessment of difficulty in attention (concentrating, shifting focus of attention, performing simultaneous cognitive tasks) or memory (learning or recall of information).
C. Three (or more) of the following occur shortly after the trauma and last at least 3 months:
Becoming fatigued easily
Vertigo or dizziness
Irritability or aggression on little or no provocation
Anxiety, depression, or affective instability
Changes in personality (e.g., social or sexual inappropriateness)
Apathy or lack of spontaneity
D. The symptoms in criteria B and C have their onset following head trauma or else represent a substantial worsening of preexisting symptoms.
E. The disturbance causes significant impairment in social or occupational functioning and represents a significant decline from a previous level of functioning. In school-age children, the impairment may be manifested by a significant worsening in school or academic performance dating from the trauma.
F. The symptoms do not meet criteria for Dementia Due to Head Trauma and are not better accounted for by another mental disorder (e.g., Amnestic Disorder Due to Head Trauma, Personality Change Due to Head Trauma).
PCS is apparently a situation where you have head trauma with loss of consciousness (I think the DSM-IV needs to be updated, since concussion does NOT require loss of consciousness, and that fact has confused a lot of people and caused them to take concussion less seriously, when there was not LOC). And PCS is about “subjective” difficulties that haven’t been demonstrated with neuropsychological evidence.
Now, a couple of red flags go up for me — and it has more to do with the DSM, which I have some problems with anyway, than it does with the Guidelines. First, that loss of consciousness requirement. That can lead a lot of people down a flawed path. The other thing is the “subjective” part, which makes it sound a little bit like it’s all in your head? Well, technically, it is, but there seems to be a certain psychological aspect to it — then again, it is the DSM, so there you go.
Now, on to Post-Concussional Disorder… It requires a history of head trauma that has caused “significant cerebral concussion”. So, who decides what constitutes “significant”? Loss of consciousness, post-traumatic amnesia, seizures… What if you get totally messed up, but none of those things happened to you?
I think this is one of the first flaws in this set of guidelines — it relies on the DSM off the bat to psychologically define what are actually complex conditions that have very physiological roots and causes and issues. Plus, that thing about loss of consciousness… That’s troubling, as this may lead doctors astray — yet again — in to the weeds of gauging “how serious was your concussion” based on the injury itself, rather than the complex cascade of events and conditions after the actual injury.
But later on page 7, they go on to say
There has been debate as to whether persistent symptoms are best attributed to biological or psychological factors. It now appears that a variety of interacting neuropathological and psychological contributors both underlie and maintain postconcussive symptoms. One source of controversy has been the observation that the symptoms found to persist following mTBI are not specific to this condition. They may also occur in other diagnostic groups, including those with chronic pain, depression, post-traumatic stress disorder, and are observed to varying extent among healthy individuals.
So, it’s good that they’re acknowledging that there are complex contributors. And it’s good that they’re pointing out that symptoms we’ve got can also be found in other groups — though I have to wonder why it’s to be expected that a condition would have “only” certain symptoms that were all its own… I can think of a whole handful of conditions which “share” symptoms with each other, yet are not dismissed as made-up and are treated with care. Anyway, that’s another patch of weeds for another time.
I’ve said it before and I’ll say it again — traumatic brain injury is a continuously re-traumatizing condition that just doesn’t quit. It can linger and morph and transform both itself and you over the course of days, months, years… sometimes to the point where you don’t even recognize yourself and your life anymore.
Which is where we get into the drawbacks of a set of guidelines like this document. I’ve seen some comments by people about its limitations, and yes, I’m starting to see them now that I’m getting deeper into it. I’m only 7 pages in, after all. Initially, I was really excited that there were these kinds of guidelines, and I still do think they offer a great service, in that they attempt to speak directly to doctors and healthcare providers. In that respect, I don’t think that relying so heavily on research and clinical studies is such a bad thing. That’s what doctors pay attention to. “Anecdotal evidence” is viewed with a mix of skepticism and scorn in most medical circles I’ve encountered, and it’s only in the past ten years or so that “evidence-based medicine” has gotten much of a foothold in the mainstream. Now it seems to be quite popular, but still the clinical studies seem to be considered the gold standard against which other sources of information are measured.
So, for what it’s worse, for better or for worse, we’re stuck with clinical studies and limited research, to make our case with the medical establishment.
It’s a little bothersome.
[pause to regain composure]
But hey, at least someone is making the effort here.
And that’s a plus.
Anyway, on a personal note, my neuropsych is out of town for the next two weeks, so I’ll have till mid-April to go it alone without someone to bounce ideas off of, and basically practice my everyday socialization chops. It’s funny, how those weekly visits serve to balance me out and keep me grounded. The times when I’ve gone it alone for a few weeks, I’ve shown up at their office a little loopy and straying back into the old territory I used to inhabit that was filled with chimeras and borderline delusions (in the loose sense — not real delusions — not yet, anyway). Somehow my neuropsych knows how to talk to me in a way that gets me to rethink my fundamental thought processes and come up with better ideas than I had when I first stopped in to see them.
I’ve always been independent to a fault, and now I find myself feeling dependent on a clinician. Ironic, that.
Anyway, it’s late and even though it’s Saturday night and I can sleep in tomorrow, I am absolutely bushed and I know it’s time to go to bed. I had a good day today. Did a lot of reading and writing and figured a few things out.