Brain Blog: The Glacial Pace of Care

I promised that this week I would write about my experiences yesterday with a Neuropsych test which is supposedly grueling, long, and designed to torture all the cognitive secrets out of my injured brain. I likened it to the Spanish Inquisition for the brain and a nice doctor who administers them only laughed – she didn’t deny that at all.

And yeah, more than anything I’d love to tell that story, sadly I can’t because I didn’t get the neuropsych test. Instead I got a preliminary 30 minute meeting with a new doctor who asked me a few questions and said that by gum we should order a neuropsych test. I’d like to say this was a surprise, I’d like to say that I could even be bothered to be angry, but the truth is Health Care is very slow, and bureaucratic, and probably the only thing in this world that moves slower than General Health Care is Emergency Room Service.

It’s a little surprising ultimately, considering how fast medicine progresses. Every day there is a new pill that passes the FDA for erections, or hair loss, or restless leg syndrome, or that cures problems that didn’t even exist ten years ago because a marketing executive hadn’t made it up yet. Medical science is hauling ass. Hauling ass right up to the bottleneck – Care.

I can’t really even give you a proper number of times that I have scheduled an appointment with a doctor, gotten the earliest appointment possible (2 months away, mind you), then had the appointment cancelled and rescheduled for several weeks later, and then had that one cancelled too. I can’t even really complain because I have some of the best doctors in the world in their field just by dint of living in Massachusetts and being so close to so many amazing hospitals. But when you are feeling sick, and run down, and hurt, and you know something wrong and you can’t do anything because you can’t get a timely appointment? It gets to you.

And I can’t really blame my doctors. It isn’t their fault as far as I can see. I can’t blame them that becoming a doctor is a really long process in school, which is ridiculously expensive, and that once you are a doctor the threats of legitimate and illegitimate lawsuits and intervention from insurance companies make you feel less like a hero and more like a pinball. I know I wouldn’t want to go through that shit. And the real money? The real money isn’t in stuff people need, like brain surgery. It is, however, in stuff that people want – like bigger boobs, or more hair, or boners.

And I have my doctors, and I waited a long time to get them, and they are amazing, and by God I am not letting them go even after all that happened last year. ESPECIALLY after all that happened last year. But it gets frustrating some times the bureaucracy of it all. Like yesterday – I thought I was going to get a neuropsych test because all my doctors said that would be a good idea and my main doctor referred me to a place that does them, and that appointment was two months after it was made because that was as early as they could get me in.

So I waited. Because that’s what you do. You can’t go yelling all the time- people will just hang up on you eventually and you’ll look like a crazy person. I’ve been in enough emergency rooms to know that the yelling thing is like a “Get Out of Jail Free Card” in Monopoly. It works once, maybe twice if you have both of them. But eventually you’re just going to be ignored in jail.

Now I expected to go in and get tested because, again, that’s what all my doctors talked about and that’s what I thought was ordered. But it was at a hospital I hadn’t been to before that is part of the hospital I regularly go to’s network, but not one of the places I have been.

I arrive sleepy but ready to do this and see what happens. They tell me the doctor I am to see, and actually get in to see him pretty much at the appointed time. Miracles. He its me down and we just start talking about my conditions, which i think is fairly normal, then he gives me a couple brief cognitive tests. This is weird because they are the same tests that were given to me when I was evaluated for cognitive therapy last year… what is going on?

That’s when the doctor drops the bomb – “based on this and what you’ve said I think we should schedule you for a neuropsych test. WAIT WHAT?!?!?! I explain to him that I thought that’s what we were going to do. I don’t really remember too much what he said but i think it was along the lines that I had to be evaluated first. He also said he doesn’t do those tests he’d have to refer me elsewhere.

I wonder if I could have been more deflated. Maybe. But I doubt it. Especially since with no test to do I had to leave and walk along the cold road for about half a mile to get to my T stop. Love it.

This bummed me out, but in no way surprised me. This happens all the time. I have actually become a bit inured to it. The bureaucracy of the hospitals doesn’t want to make this easy. They want to guard their fiefdoms. The word of all my doctors to get me in for the full neuropsych is not as important as making sure that I really did need one as none of those doctors were from this particular branch. Only our docs can make that evaluation.

Best part? I get a call yesterday evening as I am walking my dogs. It is the doctor who will be administering the test to me, and she seems very nice and accommodating. Also I only have to wait a little over two weeks to get in there. OH AND ITS ALSO AT A WHOLE NEW HOSPITAL I’VE NEVER BEEN TO. It will probably be fine. What could go wrong?

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4 Responses to Brain Blog: The Glacial Pace of Care

  1. Pingback: Tweets that mention Brain Blog: The Glacial Pace of Care | Baron Barometer's Blog -- Topsy.com

  2. I share your frustration. I didn’t know I had a brain injury until 15 months after I fell off a roof because no one checked but also because it took me three months to get in to see a neurologist at Boston Medical Center. He told me to take antidepressants and I’d be fine, only to come back in four months if I didn’t feel better. I told him to keep the drugs.

    I waited four months then went to see another doctor who laughed at the first doctor, did an MRI and said he wasn’t surprised to find a handful of hemorrhages after hearing my symptoms. It took another four months to do six hours of cognitive testing, and another two months to get in to start cognitive rehab.

    On and on. I’m learning patience. Learning when to push and when to accept my fate. This is the problem with health care. Inefficiency, bureaucratic calcification, etc.

    Wishing you well.

  3. Wishing you well!

    I had the same experience with a neurologist when I was repeatedly not diagnosed in 2002-2003. I sometimes refer to neurologists as the chiropractors of brain medicine. Like there are a few good ones out there but there are also a lot who have no idea what they are doing and are more than a little sketchy. Neurosurgeons, in my experience, know way more stuff.

    Not to say of course that neurologists suck and no one should go to them – but just to really find out about how good they actually are. Which is actuallu probably good advice for ANY doctor you go to but there it is.

    Hope you’re getting better!

  4. Pingback: Brain Blog: Lend The Eye A Terrible Aspect | Baron Barometer's Blog

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