Intrathecal Baclofen vs. intramuscular Botox for CRPS-related dystonia

If you’re considering injectable therapy for CRPS-related dystonia, you have probably heard of Botox (which is commonly used in spine-injured people to help with spastic bladders and other muscular issues), and you may have tried oral baclofen, which has the systemic and cognitive effects of its class. You may not know that baclofen can be injected into the spinal cord (intrathecally), providing therapeutic effects below the level of injection.

Based on the studies found in Pub Med, baclofen is far more effective, but requires more vigilance, largely due to it’s invasiveness and the equipment issues of intrathecal injections.

Botox doesn’t seem to do anything consistently in CRPS, for either dystonia or pain, except perhaps for prolonging the effect of stellate ganglion blocks; its rate of complications is low.

Of course, it does work for some people, but that can be said of almost any Level 2 or Level 3 medication used for this condition. CRPS is highly individuated, and its treatment certainly has to be individualized. This is the one constant feature of CRPS management.

On the basis of overall results, I would expect to see a wider acceptance of a more generally effective agent like baclofen, over the popular but generally insipid Botox injections.

Dystonia, unlike pain, is specifically crippling, even in a mild case. It impairs function in the most basic life tasks, from walking to eating.


• Studied in CRPS since 2000.
• Results generally very good for dystonia, pain, or both. The best- designed study on dystonia showed excellent results.
• Doesn’t work for everyone (of course.)
• Dose and duration must be sufficient.
• Careful monitoring for complications.


Pub Med only has two relevant studies.
• Of these two studies, one says it’s useless for dystonia, one says it’s great for pain.
• One study for allodynia: it’s no good.
• One study for improving stellate ganglion block: it’s excellent.
I haven’t looked outside of pub med. I’d be interested to see more solid data about it. This seems pretty random.

These bullet points, plus accompanying tables showing the studies and results referenced here, are in the PDF below.



Just a sip: Nanotubes, conductance and immunology

One of the most expensive and brutal treatments I’ve tried was the SCS (spinal cord stimulator) trial. This involved hammering two metal-laced widgets the size of drinking straws into that tiny, sensitive space entirely surrounded by bone which we call the spinal cavity. The one that’s usually fully-filled by a mass of busy, sensitive nerve tissue.

My arms hadn’t hurt so little in years. My spine, back, neck and head had never hurt so much in my entire freaking _life_. At the mere rememberance, I still feel the shoulder, scapular and upper-back muscles twist themselves into that ghastly position that caused the least pressure against my cord. My neck is going to be cramping the rest of the day. Wish I hadn’t mentioned it.

So yeah, that was bad. I wrote Medtronics a bunch of notes from the nurse/patient/biogeek/engineer perspective. I have seen no indication that they did anything but circular-file them, so I feel free to discuss it now. They’ve had their grace period.

There’s no reason for such flat-out stupid, ham-handed, ignorant engineering. I’ve tried to see an upside to the current SCS tech, and I just can’t.

Shoving titanium into someone who’s allergic to surgical steel? Check your MSDS sheets, gentlemen. Cramming cubic centimeters into a space that’s painfully sensitive to pressure changes of cubic millimeters? Hang on, who thought _that_ would be a good idea?

Welcome to the future of implantable devices — especially those going into immunoreactive, sensitized systems:

Meet the carbon nanotube: body-friendly, weavable, conductive, cheap, easy to work with. Does its job on, easily, one thousandth the scale of silicone and wire.

Why is this on my mind? (Gentlemen, look away and hum.) First day of my cycle after a month of progress in rebuilding basic endocrine responses. EVERYTHING is supersensitive and hyperreactive. I want a carbon nanotube *body!*

Best I can do is coconut water. It really smooths out the bumps, if I drink enough of it. Here’s to 21st century tech, and hoping it makes it into something as profitable as biomedicine!


A job well begun …

I have CRPS-1/RSD/causalgia, and when your condition has more than one name, it’s a bad sign. I was a nurse, I was a tech writer, and I remain fascinated by health and technology.

Some parts of my brain have blown gaskets, but examining the science relating to neurology/immunology/endocrinology — and mulling how it could work in real life — seems to go just fine. It’s appropriate to both my professions that I want to track, document, and share what I learn.

You’re invited to watch and engage in this interesting journey. It’s taking place at an unimaginably rich, burgeoning age of technological development and biological understanding.