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 all of 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 real issues 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.