Reflecting on the causes of BR's pain

BR had the SCS controller adjusted yesterday, with a few new programs added. We are still experimenting, trying to find a program that isn't too irritating, yet masks some of the pain.

I asked the technician how BR compared to other patients she's worked with. "Everybody's different. You just have to play around with it." We now have 12 programs with 20 power levels each. That's 240 combinations to "play around with". The vast majority of these create more discomfort for BR than the relief they provide.

She recommended a technique for setting the power level:

1. Slowly increase the power until the sensation is noticeable


2. If the sensation is uncomfortable, back the power down a notch or two

This would be fine except for the fact that BR is experiencing "sensation echoes." An unpleasant sensation will replay in his head for up to a minute or more after the stimulus has been removed. This turns the recommended technique into a form of torture that could get someone a court date at The Hague.

I'm still wondering if a cervical placement of the stimulator leads wouldn't have been more effective. Evidence is mounting that progressive MS is a result of damage to the nerve axon, which gets exposed after the myelin sheath is stripped away during the initial MS attacks. Like a metal wire without insulation and exposed to the elements, the wire eventually starts to corrode. Signals get weaker and degrade as the corrosion gets worse. Eventually the signals don't get through at all.

I found this video from the Mayo Clinic on YouTube. It talks about a couple of enzymes that may be responsible for the axon damage in people with progressive MS.



In the telecommunications world, there is an effect called electrical signal reflection.

Signal reflection occurs when a signal is transmitted along a transmission medium, such as a copper cable or an optical fiber, some of the signal power may be reflected back to its origin rather than being carried all the way along the cable to the far end. This happens because imperfections in the cable cause impedance mismatches and non-linear changes in the cable characteristics.

Could it be that the pain signals we are trying to mask are actually impulses that started in the brain and were reflected back at the point of axon damage? This might explain a couple things.

• Stress and anxiety increase BR's pain levels. Research has shown that accompanying anxiety, "Almost invariably there are physical disturbances -- palpitations, tremulousness, sweating, diarrhea, etc. -- due principally to overactivity of the autonomic, particularly the sympathetic, nervous system, and to increased output of catecholamines by the adrenal medulla." In theory, when this increased activity hits the damage, it reflects back to the brain as a pain signal.


• The sensation echo could be caused by two or more damaged axons along a single neural pathway. The signal bounces back and forth between the points of damage, losing strength over time.

Of course, I'm not a doctor. My training is in engineering and computer science. But still, my instincts tell me that if the stimulator leads were placed in the cervical spine between the brain and the axon damage, we might have a better chance of scrambling the pain signal with fewer sensation echoes.

Information Society

There is so much information out there. Some good. Some bad. So many people blogging about their lives. So many corporations and governments tracking our interactions. So many medical professionals trying to do what they can to help their patients. So many medical equipment and pharmaceutical corporations trying to sell their products. So many medical insurance corporations trying to keep the cost-to-benefit ratio in line.

Digital information never dies. Some is public, like every post I ever made on Usenet dating back to 1990. Some shouldn't be public but is, like my personal information that has been "lost" by two of my previous employers. And then there is information on the effectiveness of medical treatments.

When BR and I met with the representatives of the corporation that makes the spinal cord stimulator equipment, I had one simple question. "Based on the data you've collected over years of trials, what are the chances that someone with BR's condition will benefit from the device?" You would have thought I had asked for their first born.

The responses we got ranged from, "We don't collect that type of information," to "FDA regulations don't allow us to disclose that type of information," to "We have 'Patient Ambassadors' that you can e-mail," to "When I searched the internet, I found a study that showed up to an 80% effective rate on MS patients." All within a 45 minute guided tour/sales pitch.

It is so obvious that the SCS equipment company isn't going to talk. Why would that be? I'm guessing it's because of the insurance company. If they admit that there is less than a 50% chance of success, the insurance company may not pay for the trial at all.

But wait a minute. The insurance company has their own information. For years they have been paying for SCS trials and know which patients went on to get the full implant. So I put the same question to the insurance company -- it's been a week with no response. Why would that be? I'm guessing tort law. If the insurance company admits that there is greater than a 50% chance of success and they still denied the procedure, they may get sued.

Lost in all of this is the most important person in my life who is in a whole heap of pain. The SCS trial won't be easy for him, no matter how many times the sales critter says "it's just a little needle." Every time she said that in the meeting, he would glare at her, until he finally said, "Have you ever had that little needle shoved in your back? No? Then shut the fuck up!"

It's pretty obvious that SCS treatment won't be a slam dunk for BR, but still we are leaning towards the trial. The dosages of pain killers are only going up, and with each increase, I'm watching BR struggle more to communicate clearly. In the end, the insurance company's threshold for approval is going to be higher than ours. I just hope it isn't too high.

Here's what BR has to say.