My second neuro visit OR If only they could walk in my shoes…

Here are details from my most recent neuro visit, I believe back in August. As you can see, it was a less than stellar experience, and I’m still recovering a bit from it. It’s hard to believe that someone who specializes in neurological disorders can be so callous, but here we have it…

I had a 9:30 appointment scheduled with Dr. X to discuss headaches I’ve been having. I had been to see another neurologist about my series of mTBI’s some time back, but the results had not been conclusive, and I felt I’d just been shoved off. I didn’t mention this past visit to this new neuro — In retrospect, that was probably a tactical error, but I wasn’t sure how to explain what had happened, so I decided it was better to say nothing. When in doubt, I tend to do/say nothing, rather than initiating and seeing things blow up in my face. Plus, I wanted to start with a clean slate and get this doctor’s opinion without input from anyone else.

I had been to see this neuro on other occasions with a friend of mine who has some issues of their own. I thought it would be a good idea to work with someone who already knew me in a different capacity. I thought it would be easier for me to work with someone with whom I was already familiar. So, I had high hopes for this meeting. Hopes that didn’t pan out.

Here’s what I recall happening:

I arrived early at 9:20 and finished filling out my paperwork.

The receptionist was unpacking boxes at the time. I settled up with her for the co-pay and gave her my license and insurance card. I thought that the co-pay was $15, and when she corrected me that it was $25, I felt as though she thought I was trying to “get one over on them” and get out of paying the $10. I felt as though she was treating me like I was hostile. It was an innocent mistake on my part, and not intentional.

Around 9:30, the receptionist  had me go in to Dr. X’s office. I wasn’t sure about which door to go in, and she said “You know which one it is.” I honestly didn’t. I couldn’t remember which one was his, but when she pointed me to the door, I walked in and took a seat.

Dr. X greeted me cordially, shook my hand, and we chatted a little while.

He asked me why I was there, and I said I’d been having constant headaches.

He looked over my papers and told me that I had forgotten to fill in my employer and my occupation. He seemed miffed that I’d forgotten. It wasn’t intentional on my part. I gave him the information then, and he filled it in. We chatted a little about my work.

He asked me how old I was, and I hesitated when I answered. I don’t tend to think of myself as any certain age, and I will usually have to calculate how old I am, based in the year it is, less 1965, and then figuring out where in the calendar year I am. Dr. X commented that it took me a while to answer, as though there were something wrong with that, and I told him I usually have to do math to figure that out.

He then started to look over my information sheet, which I’d taken great pains to complete as thoroughly as possible. He flipped through the pages, and then started to work his way down through.

I pulled out my notebook with my family medical history, my history of injuries, my symptoms, and other information I’d collected which I thought might be important to know. I also had many pages of a headache journal I’d been keeping for a number of months, which showed exactly where and with what intensity I’d been having headaches. I had compiled this information over a period of more than 6 months, and it contained my most complete understanding of my cognitive situation. I also brought the notes with me to consult, so I could be accurate in my accounts. I tend to get turned around and unintentionally confabulate when I try to recount things (more when I’m under stress, but even under regular conditions, I have had a lifelong issue with unintentional confabulation), and I had hoped that I could rely on my notes to help me be as accurate as possible.

Dr. X told me to put away the notes. He didn’t want to see them. He also didn’t allow me to refer to them.

He proceeded to ask me questions about my headaches, the intensity, the frequency, the nature, the duration, and when I took a while to answer him, he became very impatient and told me I was over-thinking things.

He told me not to over-think my answers, but just to answer off the top of my head, which is very difficult for me to do.

I had to pause a lot to think, and my answers were not instantaneous. I could not verbalize my answers as quickly as he wanted me to, apparently, because he kept telling me to just answer with averages.

It’s very difficult for me to answer that simply, because nothing is that simple to me. I do not think in terms of a “bottom line” and I have a very precise and logical thinking process that sometimes takes longer than “normal” to complete. Being accurate and truthful is very important to me, and when I cannot be accurate, I become anxious. He really pressed me for quicker answers. “Just off the top of your head,” he said. “Just on average.”

It felt as though he were intentionally trying to trip me up and make me contradict myself, or find some “hole” in my “alibi”. I felt like I was being grilled, and I had done something wrong.

I had to stop and think a lot — I could see the answers to his questoins right in front of me — when he asked me about timeframes and durations of my headaches, I saaw images of calendars with days marked, and the severity of my headaches marked on the calendar (some were in colors). I could also see the pages of the calendars flipping by, and I tried to see what information was where. It was very hard for me, though, because he was moving faster than I could go, and I kept losing my place with the images. I had to close my eyes a lot to think, and I had to look down at the ground. I couldn’t look him in the eye AND figure things out, because looking at him distracted me from my thinking — and I started trying to “clue in” to him, instead of the answers to my questions.

At one point, he appeared to be very frustrated and said I needed to speed things up, or “We would be here till next Tuesday” before we got all the answers to the questions. I agreed with him, but I told him that I had to translate my visuals into words, and I am not a primarily verbal person. I tried to explain that I see the answers as images, and then I need to translate them into words, but I’m not sure it sank in with him. I was getting very frustrated, and I was tearing up, which seemed to annoy him.

He also asked me about any addiction background, and I told him I had quit drinking in 1989. It had been 19 years since my last drink, and I had not touched a single drop since. He asked if I’d taken drugs, and I told him a little bit — speed in high school, but only a few times a week, as it made me too speedy and upset my stomach. I told him had smoked marijuana while I was drinking during high school and college.

I may have left the addiction piece of information off my form, but it was not intentional. It was an oversight. He didn’t seem to see it that way.

He asked about any medication I was on, and I told him that I didn’t take any, and I was not a big medication person. I told him that I took Advil, now and then, and I had once taken it for headaches, but it had since stopped working at all.

We talked about my head injury experiences, and I gave him details from what I knew and could remember. It was very difficult for me to think on my feet, and I was becoming increasingly anxious. He was moving very fast, so I’m not sure I answered everything completely. I had my notes, but he would not allow me to consult them. When I tried to pull them out, he told me to put them away.

Dr. X seemed to become increasingly impatient with me, and he said we were just going to focus on my headaches.

He asked about the nature of them, if anything helped, if I exercised regularly, if I was under stress.

I told him that I’ve had a lot of stress, and that my headaches have gotten worse over the past 6 months. He asked if I’d been under more stress, and I told him I’d been in a very stressful job for 3 months.

He said he’s not a big “pill person”, and I said I was not, either. I prefer to deal with my aches and pains in other ways, and sometimes I’d rather just live with pain, instead of taking medications that gave me side effects.

He asked about the vertigo, and I told him it was worse when I had allergies. I told him that it was very intense and I had to hold onto things to keep from falling over at times.

He asked about my history with other injuries or conditions, and I told him about a diagnosis of lupus diagnosis in the late 1980’s, early 1990’s. He asked if it was discoid or systemic, and I believed it was systemic, but when I told him about the skin rash, he said that sounded like discoid, not systemic, and I became confused and said it may have been discoid, but not tests were ever conclusive. Also, the medications I’d been on had not helped.

After a while, we went into the examination room, and he conducted a physical neurological exam. It was standard, and he seemed to go very quickly — more quickly than I’d seen him go with a friend of mine. He seemed to be in a rush, and it was painful when he checked the reflexes on the bottoms of my feet. It was hard for me to answer quickly, when he pricked me with the pin, and sometimes it took a little while for me to verbalize I’d had the sensation. He seemed to think that I was “fixing” my answer to fit what he wanted to hear. I was getting confused and felt like the room was pulling away from me, and my reaction time was slowing.

During the exam, he asked me again if I had taken drugs recently. I told him no, I had not taken any drugs since stopping drinking in 1989. I believe he repeated the question, and I answered him again in the negative. I couldn’t figure out why he was asking me if I’d taken any drugs. It didn’t seem like the kind of thing he’d be asking me while he was checking my reflexes.

He told me that my exam was normal, and everything looked good.

We went back into his office, and he said that my exam looks clear – no indication of a tumor or vascular issues. He said he believed my headaches are tension headaches and he wrote some notes on a piece of paper. He gave it to me, and he said that my headaches are probably muscular in nature, related to stress. He also said that he thinks the vertigo is probably BPPV (Benign Paroxysmal Positional Vertigo) or Meniere’s Syndrome, and I could check with an Ear-Nose-Throat (ENT) specialist if I chose to. He didn’t seem to think I needed to see someone, but my ears have been hurting me a lot, and I said I would like to talk to an ENT specialist. He referred me to a doctor he knew and believed was good. He wrote that down on a piece of paper (his prescription pad?), as well, and gave me that.

He said that he didn’t think that medication would necessarily help, as it may cause side effects, and I agreed with him. He also said he didn’t think an MRI or EEG would show anything, which was really disappointing. I mean, I have a whole lot of issues, and I have trouble sorting them out, and the one way I can think of reducing some of the mystery, is to have an MRI or an EEG or something like that. I really didn’t know what to say at that point. All I could manage, was to agree with him, which irritated me when I did it, but I was helpless to do anything else. My thinking process had slowed considerably by that time, and I was feeling very overwhelmed and confused by everything. I wasn’t sure if he was being congenial or if he was upset with me. He seemed distant. But I couldn’t really tell for sure how he was being with me.

He asked if I exercise, and I didn’t know what to say. I lead a pretty active life, and I move a lot through the course of each day. I could see myself walking and moving a lot at work, walking across parking lots, and making extra effort to incorporate exercise into my daily life, but I couldn’t just come up with a simple “yes” or “no”. I had to think about whether or not I was going for walks. I eventually answered “Not regularly,” and he said, “No” and wrote that down. He said he wanted to see me exercising on a regular basis, nothing really heavy, just maybe going for a brisk walk with a friend several times a week. I saw a friend of mine and me walking along a road near my home, but I didn’t know when that would or could happen, as I work such long hours during the week. Dr. X appeared a little exasperated with me, as though he thought I wasn’t being fully cooperative.

He asked me if there was anything I do that relaxes me, but I was having a hard time processing at that point. I couldn’t think of anything — I was drawing a blank. I told him I draw and I write, and he recommended I draw 15 minutes a day. I couldn’t figure out how to explain that when I draw, I get very absorbed in my work, and I lose track of time, but there was no time for me to figure out how to say that. He also recommended that I exercise regularly, go for a brisk walk with a friend on a regular basis. Again, there was no time for me to respond in a way I felt was adequate.

I told him I was going to see another doctor for a neuropsychological exam, and he said he would like to know the results of that. I told him I would keep him apprised.

He said he wanted to see me again in 7 weeks, to see how I was doing.

I made an appointment with his receptionist. I had a hard time thinking through my schedule at the end of August, beginning of September, and she was not very patient with me. She acted like I was pretending to be “slow”.

Basically, I felt completely humiliated and treated like I was a liar who was seeing him under false pretenses — as though I had been an addict showing drug-seeking behavior. I left in a daze, and I went to the nearest bathroom, locked the door tightly, crouched down in a fetal position, and cried… and cried again in the car before I drove to run an errand. And felt like crap for the rest of the day. I did collect myself and manage to get on with my day, but the flow of my day was completely disrupted, as was my weekend. It was too disruptive for words, and I in retrospect, I really resent the implications that I think were in play.

Sometimes, it just sucks when nobody can tell you’ve got issues… and they treat you like a criminal, just because you’re trying to get some answers (and they apparently can’t help you, but don’t want to say so).

It also sucks to have processing difficulties that might be making things look worse — or better — than they are, and that keep you from being able to ask for help.

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.

2 thoughts on “My second neuro visit OR If only they could walk in my shoes…”

  1. I wish I had read this when you first wrote it. I can totally relate to everything you went through. Sometimes I wish I could just drop out of the world. The people part that is. My dog is pretty cool.

    Like

  2. I wish I had known this earlier, too. A number of people told me, along the line, that neurologists are a “different breed” and not every neuro “gets the tbi thing” but I guess I had to find out for myself. I don’t fault the neuro entirely for his behavior. He may have just been having a bad day. But it would be nice if the medical profession were a little less hubris-driven and a little more open to… shall we say, mystery… especially when it comes to the brain.

    I think part of the problem is that there’s just so little time. Our health care system is like a production line — a conveyor belt filled with people who need patching up by people who have spent much of their training being sleep-deprived and totally driven by adrenaline and crisis. This doesn’t seem to lend itself to considered thought and introspection, I suppose.

    And that’s something I think our healthcare system could stand to benefit from. That, and a moratorium on frivolous malpractice lawsuits.

    Like

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