03 août 2012

It’s all about confidence

If you went to a restaurant and ordered a sandwich and then asked the server what was in it and they replied ‘Oh…I can’t tell you that, because if I did, you would never eat it. But trust me – it’s really good’, would you eat it?

Or if you bought a car, and you asked the guy selling it what sort of condition it was in, and he replied ‘Oh…I can’t tell you that, because if I did, you would never get in it, much less drive it. But trust me – it’s safe’, would you buy it[1]?

Yeah, I didn’t think so.

Yesterday, I went to see the neurologist to see what he thinks of my MRI and other test results. As I predicted, they were 100% normal. Which left the neurologist with the following information:

  1. I’m having episodes of some sort
  2. My CT scan and MRI are totally normal
  3. My EEG is only very slightly abnormal – and the existing abnormality is exactly to the degree you would expect to see in someone who had once had a brain surgery like I did

For me, this means that my problem isn’t neurological, and we should try something else[2].  However, for him, this just means that we need a longer observational period and more testing. I don’t blame him for this mindset – it’s only natural that a neurologist would see a problem as being neurological – but I find myself being…less than convinced by some of his approaches.

Case in point: during the meeting yesterday, he mentioned that he wants to put me on an anti-convulsant for at least a couple of weeks, to observe and see what happens. Basically, it’s a fishing expedition; he doesn’t have a clear idea of what’s wrong with me, but he wants to give me the medicine anyway, because hey – it might make my seizures go away. Normally, I wouldn’t fault him for this mindset – I like my physicians to be proactive, and at least he’s trying something – but then we had the following conversation:

Him: So…your tests aren’t strongly indicative of anything, but I want to start on you on the medicine anyway, to see if it helps with the seizures.

Me: Ok. That seems reasonable enough. What medicine, and for how long?

Him: (some French brand name that I instantly forgot – why I even bothered asking is beyond me). It’s the worldwide standard for situations like this. Basically, we’ll ease you into it over a couple of weeks, to see how you respond. And if the side effects are too bad, we’ll switch you to another.

Me: Um…what kind of side effects are we talking here?

Him: (laughing) Oh…if I tell you the side effects, you will never take this medication. But you do not need to worry. It is safe.

Me: (hoping the expression on my face mirrors my feeling of ‘that response did not imbue me with confidence)

Him: Normally, the major side effect is a feeling of tiredness during your first few days, and maybe some headaches and weight gain. There are other side effects too, but they are very, very rare.

Me: (nodding and making furious mental notes to Google that shit the instant I get out of his office)

Him: So…you probably will not feel well for the first day or two after you take this, so maybe you should not start until the weekend, hm?

Me: Uh…sure.

As you can imagine, this conversation left me feeling, shall we say, less than enthused. I don’t mind taking medication in the hopes that it might help, but I object mightily to taking a drug that can cause (among other things): motor coordination impairment, cardiac arrhythmia, blurry or double vision, aplastic anemia, and thyroid problems. And I REALLY object to taking a drug that can cause me to hear notes a semi-tone lower, develop serious adverse cognitive anomalies, develop potentially fatal skin reactions, and even give me lupus[3].

But Abraham, you ask…what is this wonder drug that could potentially kill you while doing absolutely zero good?

Well, friend, let me tell you: it’s called carbamazepine, and it’s a great drug – IF you have epilepsy. It’s been around since the 50’s, it has been in use for epilepsy since the 1970’s, and its chemical mechanisms are actually understood[4]. If you have epilepsy, it helps suppress your seizures, it offers minimal side effects, and it absolutely helps you get your life back.

There’s only one problem: I don’t think I have epilepsy. All of my tests were negative or inconclusive, none of my ‘episodes’ really resemble true seizures[5], and my neurologist flatly admitted that he’s just kind of fishing around at this point. Nor, to be honest, do I have a huge amount of confidence in my neurologist; yes, he is truly an excellent doctor – one of the finest in Africa, and absolutely up to US or European standards – but he just isn’t that familiar with my case. We’ve met exactly twice, his English is about on a par with my French, and there’s just enough of a cultural divide that I feel less than fully relaxed around him. I don’t doubt his competence, I just feel that a physician who comes from a cultural setting where ‘take this because I say so, and don’t worry about the potentially harmful side effects’ is appropriate may not be exactly the person I want rummaging around in my brain[6].

Consequently, it should come as no surprise that, when Peace Corps says that it’s starting to look like the best solution might be to send me home to my neurosurgeon, I tend to agree with them. No, I don’t want my service to end, and no, I don’t think my problem is neurological (I definitely want to talk with an endocrinologist as soon as I can), but if Peace Corps insists on me being cleared by a neurologist before I can  return, I know who I want doing the clearing and he isn’t in Dakar.

So here’s where I currently stand: right now, my neurologist wants to start me on this medication, then observe me for 10 – 14 days for adverse reactions, then release me to fly to the US. However, the Peace Corps doctor here didn’t actually start me on the medication yet (she said to give me time to see Dakar, but I think she wants to consult DC first), so I’m not actually certain that this will happen. And if/when the time comes, I’m not actually sure I’ll be willing to take it. We shall see.

I still don’t have any firm answers right now, but in short it would appear to no longer be a question of if I’m being sent to the US, but rather when and for how long. I don’t know if I’m going to be sent to my home of record for a consult, but still on per diem, or if I’m just going to be medically separated, or even if something else entirely will occur. All I know is that what can be done in Dakar has been done, and now I’m just waiting to see what DC says about my future.

And that’s likely all I’ll know until the weekend is over.

Look for lots of photos tomorrow!

[1] Although, in fairness, it occurs to me that this is basically what happens every time I get in a Ouaga taxi. The unspoken rule is, you don’t ask about the dents and broken glass and weird noise coming from under your seat, and they won’t tell you about it. This helps everyone sleep better at night.

[2] Like seeing an endocrinologist

[3] But at least my stumbling, blurry vision having, cognitively impaired, auto-immune compromised, skin-destroyed self will be free from phantom limb syndrome and intermittent explosive disorder…it actually helps cure those problems.

[4] A BIG deal for me. You know all those antidepressant commercials that say real fast ‘Zoloft is thought to work by…’ yeah, no. Not for me, thanks. You either know what it does, or you don’t put it in me.

[5] Although in fairness, there are many kinds of seizures, and it IS absolutely possible that my fit the bill. They just don’t have the corresponding EEG evidence to back it up.

[6] This is ironic, because I’m a big opponent of prescription drug advertising, and I honestly feel that you should never, ever say to your doctor ‘what? You’re giving me that? Could I maybe ask you about (insert drug name you saw on TV) instead?’ It smacks of self-diagnosis and is idiotic. Normally, I take what my doctor tells me, when he tells me, for as long as he tells me, and then I toss the bottle. That I would want a different doctor because of a disagreement over a prescription is definitely a new experience for me.