h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

What Brings Me Here

I have syringomyelia. Here's a link to a picture from the MRI that was done in 2009:
http://www.lilatladera.com/h2g2/syrinx_t7._annotated.jpg
Syringomyelia (SM) goes after the spinal cord, opening up gaps that fill with spinal fluid. There are nerves that treat the inside of the spinal column as a conduit; they run alongside the spinal cord. So when the spinal cord swells, those nerves are jammed against the interior processes of the vertebrae, and damage ensues. The syrinx can occur anywhere along the length of the spinal cord, so there's a whole cloud of symptoms that may or may not outpicture. There is no cure. The disease, if that's what it is, was discovered after the advent of MRI technology, and the MRI picture remains the only way to diagnose it. SM may be congenital, or it may come about as the result of trauma, or it may be idiopathic, which is medical-speak for not having a clue.

I got to age 60 before SM happened to me. Nobody can say how it came about. I was always fit and had two athletic careers, equitation and martial arts before my thyroid started to pack in. Now I'm paraplegic and sort of numb from the waist down. I say sort of because there's this thing called neuropathy that comes on intermittently, a discomfort that is hard to describe. Prickly, buzzy, hot, cold, and sometimes painful. My proprioception is gone; I have no idea where my legs are unless I look at them. The next MRI takes place this month; I hope this will help predict where the disease is taking me next.

Will SM kill me or will it be the secondary problems? I was just diagnosed with cellulitis yesterday and am back on antibiotics. I've lost track of how many UTIs I've had this year, thanks to the foley catheter I have to live with. There is a pressure sore that never quite heals. I have an advance directive on file: that's also called a living will. You can't asked to be euthanized, but you can specify whether or not you want your life extended at all cost. Me, I just want painkillers and hydration, and I'm beginning to think it would be good to have a Buddhist monk to guide me along, but that's a subject for a different journal. I'm giving my body to the University of New Mexico Anatomical Research Lab after I'm done with it, where it will reside for a couple of years after which, having exhausted its uses, it will be cremated. The ashes will be scattered in the Bonito Valley, which is part of the Pecos River watershed, so in the long run they'll end up in the Gulf of Mexico, maybe get in the gulf stream and hitch a ride to Europe. A whole new bucket, a whole new list.

Meanwhile, I intend to play to the whistle. Thank bob Ladera has free wi-fi! I can still be constructive and contribute to the world through the internet, download books, do website development, talk to friends from all over, and, most of all, keep learning.

Enough about me -- back to the regular topic tomorrow.

The way you describe the pain in your legs is the way hubby sometimes tells me his MS affects him, also in his legs. He *can* stand, but not for very long periods of time and can only really walk about 10 yards before taking a break.

Onwards and upwards, as they say.

Deb

Yeah, I think this particular journal will resonate manly with fellow sufferers of neurological diseases and/or their relatives, but it had to come somewhere in the narrative.

When some medical entity asks me to evaluate my pain on a scale of 1 to 10, I'm at a loss, because this isn't pain as I used to understand it. Pain is something that interrupts your existence and commands all of your attention. Discomfort is something you can push into the background and get on with other things.

I've heard some of my room mates reply, when asked that question, "Oh, 10!" And as they say that, they are slumped in bed looking relaxed. Pain 10 is screeching all-consuming please-shoot-me-now agony. In my opinion. The lady might be an incredibly advanced yogi, but then the correct answer would be "Well, it would be a 10, but I'm a yogi and I have pushed it back to 3."

There needs to be another way of measuring pain. Maybe by ECG?

Not resonate manly, resonate MAINLY. spellcheck didn't catch that one!

We're always taught that pain is what the patient says it is. It's a subjective experience. I'm not sure what good it would do to measure pain objectively. If one of my patients can't cope with the pain and wants help then I'll intervene. If it's too much for them.

Pain is tricky, though, isn't it? You have referred pain, for example, where the patient complains about a pain in one place that actually originates somewhere else. So sometimes what the patient says can't be relied on.

I suppose so, but I I think it's more pain severity than aetiology. If someone tells you about there pain because they want you to do something about it, then i think it's worth doing something about it. Usually that involves figuring out the cause, which is where knowledge of referred pain comes from.

The figuring out part, that's where the pain comes in!

"You want to stick needles all down my leg and send electric jolts??"

Ahh nerve conduction studies!

The patient refused, and not just because of cowardice. They wanted to charge me thousands of dollars I didn't even have, for the experience.

Eeeep.

How horrible to have to think of it. Maybe your doctors would be would be horrified that I sometimes try 'neuropathic medication' for neuropathic - sounding pain in someone who has lots of risk factors for neuropathic pain.

I think that for an American doctor or PA you can prescribe it only if there's an insurance code (read: billing code) attached to it AND if the insurance company accountants approve it for a given patient who presents special circumstances.

But what do you consider to be neuropathic medication? Besides the gabapentin, I mean. Medical marijuana? That's permitted in New Mexico, but the paperwork is pretty daunting.

Surely you can make a diagnosis and attach a billing code without doing all the tests. I mean you must still be able to make a clinical diagnosis in the US? Clearly they have if you take Gabapentin.

Gabapentin, pregabalin and amitrypline are the neuropathic medication we use most often. We never use medical majiujira. Which is good because I can't spell it.

Here's the guidelines we tend to follow. Actually there are separate ones in scotland.
http://www.nice.org.uk/nicemedia/live/12948/47949/47949.pdf

I need to read the mammoths reply, and other's when I'm a bit more sober... Having somethign* of a vague medical background, Syringomyelia is, err, I think* not somethign I've heard of before but, then, again, you probably don't really want yet more geeky medical people, taking and 'interest' in it, just because 'its soudns intersting', as it were....
So...
(but very gently, of course)

I've downloaded that to read later. Thank you.

There is a minority of medical practitioners who augment their income quite nicely by giving all their patients a full battery of tests. Right now I'm digging for the article by Atul Gawande that appeared in the New Yorker about how some doctors were profiteering from Medicare by excessive testing...

but he also wrote this excellent, excellent article about end-of-life decision making that is totally germane to my NaJo series. The link below is about the award Gawande won for the article, and there's a link to the article itself therein:

http://www.hsph.harvard.edu/news/features/gawande-national-magazine-award-html/

I'll post the other one as soon as I find it. Obama made all his staffers read it.

Found it :

http://www.newyorker.com/reporting/2009/06/01/090601fa_fact_gawande?yrail

About a clinic in McAllen, Texas, whose medicare billing was way disproportionate to the size of the facility.

I guess this is the reason why I choose my specialty. They just seemed to do this sort of stuff better than all the other doctors. We tend to accept that death is a natural part of old age, and accept that sometimes it happens and there isn't a great deal that we can actually do about it. The current boss (aka @trish_the_doc on twitter do follow her, she likes to chat ) is really brilliant in these situations, she keeps telling me off for doing too many tests. We don't do lots of tests, and we think about what we're trying to achieve when we do the tests.

We (mostly) grew up having to justify every test we wanted our patients to have to the radiology department. We don't need to do that so much any more, mostly the radiology department can do pretty much any test we need, and pretty quickly, (or maybe I just request more appropriate tests).

But back when I qualified (which was only 8 years ago): want a CT scan for your patient? Be prepared to explain to the sarcastic radiologist exactly how it will alter management. And they'd have to stay in an extra few days for it as well, so you'll need to explain to the patient and their family just how important it is as well. So you learnt which tests you really need to order.

Mind you I went on a course about stroke medicine in Germany a couple of years ago. They told me that they only get paid for treating a stroke if they do a scan of the carotid arteries. Ok, seems sensible enough. But if you have a stroke due to a narrowing of the carotid arteries then you are recommended an operation to open them up again. I tend to explain everything, and say 'if it did show this, would you want an operation', and if they wouldn't want one I'd not order the test. When I explained that to the Germans they were very shocked.

"They only get paid... if ...." That sounds as if the insurance setup manages the doctors, just like here.

My father (of nearly pure German descent, as it happens) looked on his body as a machine, maybe a car. If something went wrong, he took it to the doctor, and if surgery was the option, why, he had it done. And if his body wasn't running just as smoothly as it was before the service, then it was all the doctor's fault and nothing to do with his lifelong smoking habit.

I, on the other hand, have no plans to treat anything else that comes along, because, well, say I am suddenly diagnosed with breast cancer. Should I really go through radio- or chemotherapy and expensive drugs and surgery when I'll come out the other side still the proud possessor of an incurable boutique disease? That might be exacerbated by cancer treatment? It makes no sense, and I'm a religious sort of person. My PA agrees and she's even more religious than me.

So I applaud you for allowing leeway for those who don't want to be treated, cos I had thought you were more on the side of the mechanics.