Showing posts with label doctor. Show all posts
Showing posts with label doctor. Show all posts

Tuesday, October 14, 2014

Received Wisdom of Doctors

Don't believe it.

Some of the earliest advice given to me after the strokes* was to doubt received wisdom. I have found that advice to be good, for several reasons.

First, most people don't really get probability; that's why casinos work.  When something is classified as "very unlikely," it is important that the possibility still obtains: "very unlikely" is NOT "impossible." Recovery is possible.

Second, doctors don't know everything about the brain, although they are usually in authoritative positions. As much as we would like to get answers about our brain damage, and as much as we expect doctors to have those answers, they don't. I'm not saying that they're not experts, but research into the fundamentals of the brain is still happening. They don't have all the answers; nobody does.

Third, the physical brain and the insubstantial mind are related. They are not separate nor separable things. Some brain damage causes changes in personally, beyond the behavioral changes that are an inevitable consequence of having brain damage.

Fourth, recovery takes a long damn time. A lot happens that doctors never see, and rarely perceive. They often have too many patients, and are not geared to detect the slow, steady improvements that are a feature of brain recovery. By and large, our changes are not going to appear in blood, urine or even spinal fluid samples. A specialist might see you once in the first six months and never see the small daily improvements, or the hard work that goes with them.

Thus far, it is not possible to deny anything I've said. That truth should be enough for anyone. I'll speculate: The thought that recovery is possible is necessary, but not sufficient, for recovery to occur.

When we do not think recovery is possible, it is unlikely to occur. The brain evolved for efficiency: use as little energy as possible to perform tasks. Don't train both hands to be deft, stick with a dominant side, for example. This is antithetical to recovery** which requires that we do things poorly again, clumsily , slowly and awkwardly to learn how to do them competently and even well once more. When we don't think there's any point to doing things the hard way, then we don't and an opportunity for recovery, instead becomes further reinforcement for compensation. The thought that recovery is possible is necessary.

It is not enough, though, just to sit on your tush and think "I can recover!" to yourself. You have to do something about it. If you have brain damage, somebody, somewhere has said "use it or lose it" to you***. Recovery goes further than that, it requires that you force yourself to do things the difficult way, it is often tedious, and it mostly sucks. The alternative, inaction and stagnation, is worse. I'm lucky: the damage I have is not cognitive. I can fix physical things comparatively simply. I must do the work, though.  The thought that recovery is possible is not sufficient.

Medical professionals use phrases like 'very unlikely' with experience, compassion and precision. It was unlikely. Believe that very unlikely means impossible, and it will stay unlikely. I dare you, instead to give them the lie, be the exception, and change the statistics, because recovery is possible.

In an upcoming post, I'll give you more personal anecdotal evidence of recovery. It surprised me, three years on.


* By Nigel, who had had his stroke six years before. He'd left in-patient rehab (and been written off by insurance, therefore) able only to wriggle the toes of his afflicted side. He walked into my hospital room.

** Although it is consistent with compensation, the side of rehabilitation I largely reject.

*** If they haven't yet, they will.

Wednesday, March 21, 2012

Neurologist Visit

Yesterday, I took a trip up to London to see a consultant neurologist with a specialty in dealing with vision. I'm due to go up to the regular got-referred-in-early-December eye clinic in two weeks' time, but when I got the appointment for that clinic, nearly a month ago, I was desperate to see someone about my sight, and so I shelled out to see this guy privately. He's one of the pre-eminent neuro guys around, all the people at the eye clinic will know him, his name was given to me back when I was in hospital in the US, so he's definitely the right guy to go see.

Except I don't believe him, and I think he's wrong, and while I don't for a second feel like I wasted the money (on the order of $500, thank you disability allowance), I got more out of seeing old friends and teachers from drama school in the afternoon.

He was professional, thorough and on the ball, and thought that I'd probably seen all the improvement in my double vision that I was going to. The one and a half syndrome might improve. The oscillopsia (vertically wobbling eyes) could maybe be treated with a drug... that would have a deleterious effect on my stability, making it challenging at best. My balance issues are likely unrelated to my vision, but daily balance exercise for ever will help. So:

• Diplopia - tough shit, carry on.
• One and a half syndrome - tough shit, carry on.
• Oscillopsia - there's a drug, it sucks, probably tough shit, carry on.
• Balance - tough shit, carry on with your walking stick.

Also, since the one and a half syndrome is so rare these days would I mind coming up for a half day with some students... they'd reimburse travel. Of course.

Now, I'm in no rush to dismiss the expert opinion of an eminent neurologist (I'm still going to, it's coming), and I'm genuinely happy to have someone pay for me to go up to London and amuse medical students for SCIENCE, and I may just be in deep denial about the whole thing, but I respectfully decline to take his word for it, for two major reasons:

First, he quoted to me the neurological canard about there being negligible progress after about six months. Since I have seen walk into my hospital room (with a stick, and with difficulty, but walk) someone who could move only the toes of one side at six months, I consider this, on its face, false.

Second, I continue to see change and progress in my vision. Slow, for sure, and inconstant, but I am certain that the double vision is gradually improving, as I mentioned a week or so ago. My left eye can look slightly to the left of the midline which says either my left LR is weak but working, or the diagonal muscles are working hard to try and compensate.

Underlying my dissent from neurological orthodoxy is a question that remains unresolved for me, mostly because I'm not asking it hard enough, or of the right people, or because we just don't know. It is this: how are the nerves and muscles of my eye different to all the other damaged nerves?This is crucial. My eyeballs themselves are fine, it's the nerves connecting to and controlling the extra-ocular muscles that are damaged (or dead) and must be worked around. Going to the gym, as well as making me fitter and stronger, has improved the musculature, control and nerves of my right side.Why should it be somehow less effective to work the the muscles of the eye? Show me the science.

More nebulously, and rather irritatingly foo-foo-ey, I am arriving at another conclusion about our neurology and the brain's rather amazing ability to recover function: believing we can or should heal some part of the brain, or re-learn some useful skill makes it possible to recover that function or skill. I can't be doing with some of the deficits I have, and I'm determined to eliminate them, and I think that that choice, that mental direction, influences the actual neurology of recovery. Again, I want evidence beyond the anecdotal, and my personal, and again I have arrived at a question I would love answered:

Is there a significant difference between the expected and actual outcomes predicted and observed by neurologists when treating stroke patients as compared with treating victims of external brain injuries. Do we have higher expectations of, say, Gabrielle Giffords, who was shot in the head, than we do of a stroke sufferer, and does it make a difference?