Two down, one more to go

DTI-MRI
DTI MRI – Diffuse Tensor Imaging that shows all the connections in your brain

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.

And boy, am I ready to let that old one go…

Onward.

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Author: brokenbrilliant

I am a long-term multiple (mild) Traumatic Brain Injury (mTBI or TBI) survivor who experienced assaults, falls, car accidents, sports-related injuries in the 1960s, '70s, '80s, and '90s. My last mild TBI was in 2004, but it was definitely the worst of the lot. I never received medical treatment for my injuries, some of which were sports injuries (and you have to get back in the game!), but I have been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications since I was a young kid. I’ve done it so well, in fact, that virtually nobody knows that I sustained those injuries… and the folks who do know, haven’t fully realized just how it’s impacted my life. It has impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, in hopes of successfully addressing my own (invisible) challenges and helping others to see that sustaining a TBI is not the end of the world, and they can, in fact, live happy, fulfilled, productive lives in spite of it all.

3 thoughts on “Two down, one more to go”

  1. Super excited that you’re getting the DTI – I sure wish more neurologists would start realizing that there’s more tools than MRIs! You’ve gotten this far – hope you get more answers soon!

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  2. Thanks – so am I. Huge relief! What I loved, was when both the neuro and the nurse practitioner didn’t even look at the MRI CD I brought with me. They sort of sniffed and dismissed it, which was classic. Right there, was the reaction I’d been looking for… for years. The thing that puzzles me is that the former neuro, who was well aware of my history of TBI AND who used to actually work in the new neuro’s office, never followed up on that. It was all about migraine and looking for issues there. But they never got an imaging overview of all my issues. That’s confusing to me, because they actually seemed fairly “with it”. Long story short, there will be no more of that foolishness, and I’m waiting for the call from the MRI place to set up my appointment. Fingers crossed, that my insurance approves it.

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