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.