I'm not dead yet

Closing the door on Spinal Cord Stimulation

One month after agreeing with the pain management team to move forward with a cervical SCS trial, and one week after getting a tentative date, the pain management team has pulled the plug on the trial. Doctor CYA doesn't feel that the risk-to-benefit ratio is low enough. I really wish he would have told us this back in mid-April, so we could have moved on to treating BR's other symptoms.

The pain management team will now be exclusively playing the role of providers of controlled substances, per Texas law. We are moving back to Percocet from Norco for break-through pain. We will also be talking to the neurologist about SCS affects on motor ability, and Solu-medrol infusions to treat fatigue and weight loss.

Action under the sheets

This past Friday, I was working feverishly on a bit of tricky SCons code to correct some build automation issues, when I heard a series of loud cries from the bedroom. The sounds were remarkably similar to those BR makes when he's having a seizure, so when Josue called for me, I feared the worst.

When I entered the bedroom, I found BR alert and crying, with the sheets pulled back off his right leg. I asked him what was the matter, and he said, "Watch this." With great effort, he raised his knee six inches off the bed without using his hands! It's been over a year since he's had that kind of strength and control over his legs.

Ever since the SCS trial, we've noticed that his right leg has been twitching more, and he's been able to bend and extend the foot at the ankle again. Now with this development in his hip flexors, we are wondering if the stimulation may have triggered his CNS to re-route some of the damaged neural pathways. I'm definitely adding this to the topic list for the next visit to the neurologist.

Normality has been restored

"Please do not be alarmed," it said, "by anything you see or hear around you. We are now cruising at a level of two to the power of two hundred and seventy-six thousand to one against and falling, and we will be restoring normality just as soon as we are sure what is normal anyway. Thank you."

The Infinite Improbability Drive from The Hitchhiker's Guide to the Galaxy, by Douglas Adams.

Yesterday, we got that sign we were looking for. I went to change BR's Fentanyl patches, and found he didn't have any on. That's never happened before, so it didn't even cross my mind as a possibility. I must have gotten distracted while changing them the last time. Fuck.

I'm kinda glad we've started the end-of-life conversation anyway. As BR becomes more and more tolerant of the opioids, his pain level will continue to rise. At some point we are going to have to make the call to take the dosage to a level that will leave him unconscious most of the day. I imagine that's when hospice will be called in.

Anyway, he isn't going down without a fight. We met with the pain management team yesterday and told them to schedule the cervical stimulator trial ASAP.

SCS trial ends without achieving goals

The trial is over. The wires were removed yesterday.



Click here for pictures of the wires being pulled out.

For the trial to be considered a success by the insurance company, BR's pain level would need to have dropped from the 6-8 range to the 3-4 range. After a week of experimenting, we were only able to get it down to the 5-7 range. So there will be no permanent lumbar stimulation implant.

The pain management team is going to consider a cervical trial, but nothing definite yet. In the mean time, we are bringing the Fentanyl dosage back up, and are considering biofeedback as a way to break the anxiety-pain cycle.

Last night was another wonderfully social evening on the front porch. We shared some good Absinthe with the neighbors, and started planning a block party for late May.

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.

Spinal Cord Stimulation Experience (part four: DVD Extras)

Spinal Cord Stimulation Experience (part three: post-op)

Spinal Cord Stimulation Experience (part two: pre-op)

Spinal Cord Stimulation Experience (part one)

SCS trial to be scheduled for early April

We got the call from ANS yesterday evening. The insurance has approved the spinal cord stimulation trial, and we are tentatively scheduled for April 3rd. I'm still a bit freaked out that we are going to allow someone to implant wires in BR's spine -- wires that will be sticking out for the duration of the trial and connected to a controller. Oh boy! I guess if I got past the suprapubic cystostomy tube, I can get through this. It's only temporary.

Now we just have to knock out this latest UTI, and BR will be good to go. Cipro twice a day for 2 weeks should do it.

We are definitely having a rough transition from Adderall to Provigil. After completely replacing the Adderall, BR's mental fog is back. He's sleeping 12-14 hours at night, and in his chair during the day. All this unconsciousness puts him at a greater risk for pressure sores; I'm being extra vigilant. A call to BR's pain management team lead to the suggestion of reducing the Provigil from 2x to 1x/day, and staying off the Adderall.

steve: "So you are saying that less is more?"
PMT: "Yes."

We'll give it a shot. I leave for California on Sunday, and would really like him to be more self-sufficient for his mother and aunt.

SCS trial still in a holding pattern

BR and I went and saw the pain management doctor today. It wasn't as bad as I had feared. Sure, there was a certain amount of CYA going on, but nothing that I would consider harmful to BR. I've decided to go ahead and discuss BR's medications here, but not dosages or doctors names. The community benefits cannot be discounted.

So we are going to try to wean BR off the Adderall and replace it with Provigil. We'll let you know how that works out. It seems to be all the rage among Silicon Valley executives.

We also discussed the placement of the SCS trial leads in BR's spine. After reviewing the latest MRI report, the doctor agreed that we should plan on trying a cervical spine placement in case a thoracic placement is not effective. It is now up to the insurance company to approve the trial. The doctor promised to keep the ball in their court.

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.

Spinal Cord Stimulation -- Next hope, or next disappointment?

We had an appointment with the neurologist two days after the failed pain pump trial. He keeps talking in terms of controlling lesion count and enhancement, when BR has never had any enhancing lesions; not even on his first MRI with contrast. And the lesion count has always been stable. I'm convinced that the standard relapse-remitting MS treatments are of little to no use.

So we turned the conversation to quality of life. The symptoms need to be controlled in the following priority order:

1. Unbearable pain from waist to toes.


2. Worsening loss of manual dexterity.


3. Stabilize weight

Focusing on symptom #1, he promised to consult with the pain doctor to come up with a plan of action.

On Tuesday, we met with the pain doctor. He and the neurologist recommend a spinal cord stimulation trial as the next logical step to control the pain. In the trial, they will insert two electrical leads into BR's spine, and attach them to a controller that will deliver pre-programmed electrical stimulation which should block the pain signals from being transmitted to the brain.

Here's where I get a bit doubtful. MS has been described to us as making the damaged nerves "act like crossed wires". A signal that was traveling up one neural pathway degrades in quality, and can actually end up on a different pathway. Given that the majority of BR's lesions are in the cervical spine, I'm having a hard time understanding how stimulation of the lumbar spine will help. I asked the representative from St. Jude Medical to provide any data they have on the effectiveness of SCS on MS patients.

Then I started digging around on the internet. Studies that I found show between 50 and 75 percent of MS patients who try SCS get symptom relief, but the one study that broke it down by the level of disability showed that patients who are already in a wheelchair are much less likely to benefit.

I guess we need to continue to think positively. Even a 50% chance of pain relief is worth a trial.