Friday, August 28, 2009

Panel with Dr MacDonald, Dr Hinderer, and Dr Nieshoff

Q: Dr MacDonald, you said that when you look at a patient's maximum function, that's what you work from . . . is there a way to know after a number of years where a patient is with precision?

The techniques are being developed to let us get at that. We rely on a careful clinical evaluation. The imaging doesn't tell about function; it's just showing anatomy. If you take a group of people who all have the same number of connections across, or the same mass of connections, they may all function differently. When we marry that kind of measurement to the progress in treatment, we learn a lot. It's an imperfect system, but getting better. It's even possible to get around the hardware problems, just takes a different protocol.

Q: Dr MacDonal, my son has an incomplete c5/6 injury and is doing therapy at SCI step. You scared me when you said that baclofen is detracting from his progress; he's thinking of getting a baclofen pump.

There's no doubt that you have to try to balance this, and that the benefits of baclofen can be important. I'd recommend that he get to a place where he can be fully evaluated . .. the answer is not to just go get a pump. DR Nieshoff jumps in to say that if the person is taking 400 mg a day, you have to ask why? Sometimes a period of gradual withdrawal and then gradual increase can get to the same reduced spasticity without that level of medication. Also I'd look at what might be causing the spasticity. I'd be loathe to consider a pump for a young person. Dr Hinderer says that several studies have been done to look at what can reduce the need for a pump. There are lots of things that reduce spasticity, but for an intracathal pump the FDA only approves baclofen.

Q: This is for both Steve and John. One of you just said that 2/3 of what we do in medicine is not evidence based. With FES, we have the luxury of not needing to amass more evidence, and there is a lot out there already to show that FES has many well-established health benefits. BUT, I do NOT think there is evidence anywhere to show that it causes axon regeneration and myelination. That's what your little cartoon seemed to claim. Comments?

John answers that it's clinically impossible to prove myelination, BUT with FES at the moment we're sort of at a dose-finding Phase II level of trial with spinal cord injury. Right now I advocate 3 hrs of FES, but that's based on the AB nervous system and has nothing to do with damaged CNS repair. Now it's time to do some animal models to look at what's happening at the molecular level. The technology is just beginning to catch up with that.

Dr. Kerr gets up to comment . . . Peter knows the answer to the question he just asked, because he's working on a trial with us that will try to see if FES is really needed, or if the same thing happens on a molecular level with just passive range of motion. From our trial, you can say that some people will recover and some won't. The question is what's the molecular fingerprint of repair. I think we're on the brink of understanding very clearly what FES can do.

Dr. Hinderer says that a challenge is finding something that is reproducible and reliable and also subject to change. It's important to look at methods other than what have traditionally been used; the ASIA scale is not very useful. The one Dr. McKay described yesterday is much more sensitive and something like that will definitely be important as we go forward.

Q: Has there been a look at more aggressive forms of rehab? Where is the health care debate going when it comes to the need for more and better?

Dr. MacDonald says that it's clear that we must have a way for a majority of people to access quality rehab. It will require emergent technology, using some kind of smart systems that let us know which of 20 factors is important. This is doable with thousands of patients, but it's not doable with hundreds. FES is good, but it's only about a third of what we do. Once people go home they have to be able to do it. We're going to need to demonstrate to the government that this works, and not just in reduction of complications. Dr. Nieshoff says that like it or not, we're one of the most expensive groups of patients to treat. We have to teach our legislators the difference between being penny wise and pound foolish.

Q: There's been a lot of talk about how we quantify motor control. It seems that Barry McKay's method is pretty good . . . do you know if this is going to become standard or if something else is?

Right now ASIA is the best we have; it's not very good but if you find someone who's good you'll get an accurate result.
Diaagreement - I think the ASIA scores are meaningless, and that there are quantitative measures of motor and sensory and autonomic function, which we ought to be pushing hard to get. It's not enough to say that ASIA is the best we have, so we have to go with it.

Can we do better? Certainly, but if we were in court that's what they'd go with. it is the standard.

Q: How do you detect subtle differences when they only have 5 levels?
When it's done by the book there's very little subjectivity involved. It's designed to be as objective as it can be. There are some components that are a little iffy, but right now this is the standard.
What you're talking about is scalability . . .one solution might be to increase the number of levels, like from 5 to 10 -- but better still would be to take out the examiner error.

Q: I'm a c4/5 hemiplegic. I was listening to you talk about the various things that have happened in rehab . . I want to back up what you have said about the need to get into exercise therapy. My question is about fatigue. If I cook a meal I have to go lie down because I'm so tired. If I walk for 6 minutes my Oxygen SAT goes down to 70.

You need a good onceover by a spinal cord doc. What you describe is things that can make a big difference in the way you function and in your own safety.

The end. On to the break, and then the breakout sessions. Woo hoo!

1 comment:

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