First of all, I would like to apologize for not posting for the last two weeks. My pain has been pretty overwhelming, so I have been sidelined despite best intentions to publish.  As promised, here’s the first of several planned pain management posts.

My Dad is presently heading back to Asia from what I not-so-jokingly call his World Pain Tour.

Earlier this summer Dad decided he needed to set aside, temporarily, his global investigation of innovative research on SCI motor function recovery.  Consequently, he’s been working recently to get a better understanding of the severe neuropathic pain that afflicts approximately 15% of SCI survivors – notably including me!

Unfortunately, pain research involves a very different branch of neuroscience, say than stem cell research, so Dad had to basically start from scratch.

First he met with Professor Chi Wai Cheung at the University of Hong Kong, where Dr. Cheung heads up the new interdisciplinary Laboratory and Clinical Research Institute for Pain Management.

And then Dad headed off over the Pacific to visit with researchers and clinicians across the U.S.  Eventually, he ran out of time on this trip to call personally on leading pain investigators and clinicians in the U.K. and Europe, whom he hopes to meet in the next few months.

Nonetheless, some very interesting insights have already emerged.

The most important of Dad’s discoveries has to do with the phenomenon known as Neuroplasticity and the possibility that I am unlikely to attain relief from persistent severe pain until we figure out how to re-map my brain!

This is because once the spinal cord and brain have been under sustained pain-generating pressure from an injury, it appears the “pain memory” can imprint such that severe pain remains even after the original source of the pain is removed.

In my case, think about the large arachnoid cyst mashing my spinal cord back into the sensory neurons of the dorsal root ganglia.  For more than a year the increasing pressure tormented me, and then on May 14^th my cyst is suddenly removed, but the pain remains.  Big disappointment, for sure, but in recent years neuroscientists have discovered that all sorts of neuronal functions, including pain memory, can be manipulated and changed beneficially.

Or think about the so-called “phantom pain” experienced by seriously injured soldiers … like the double-amputee complaining of severe knee pain.

Even such a thing as a “brain map” may come across to some of my readers as pretty far-out thinking, let alone the idea of trying to re-draw my own brain map to manipulate the functions of some of the 100 billion neurons inside my skull.

But for readers who may be interested in this, I can recommend an astonishing book that I just finished reading.  It’s titled “The Brain That Changes Itself” by Norman Doidge.  And it’s very well-written for a non-technical audience.

Anyway, while I grapple with ways to handle intermittent pain break-out crises (more on these drug-based options in an upcoming post) Dad and I will be assessing a diverse menu of brain-mapping options.   Already these range from the Qigong breathing techniques of Traditional Chinese Medicine … to modern hypnotherapy technique … to computer-based “games” designed by neuroscientists to alter how neurons “fire together to wire together” … and on our radar is also the short-term (6-week) use of Lithium carbonate that was the subject of a double-blind clinical trial led here in China a couple of years ago by Rutgers Professor Wise Young.

Dad once reminded me that humans think with ideas rather than with information.  And while he has already managed to gather up a lot of new information related to pain management strategies, the crown jewel of his current trip seems to have actually been an idea.

And that idea is that the pain being registered by my brain is likely to have resulted from neurons wiring together to encode an exaggerated pain message that can itself be changed.  Indeed, recent research suggests the prospects of being able to remap my brain, without drugs, to alter its pain memory look quite promising.

While this is admittedly leading-edge stuff, Albert Einstein is said to have defined insanity as doing the same thing over-and-over again while expecting a different outcome … sometimes referred to as a “hope spree” in the trading world.   So the way forward seems to exclude hope sprees as well as insanity … rather, innovation looks to be what’s needed to reduce my pain enough that I’ll be able to get on with a productive life.

🙂

This past week has been an especially challenging one, although I have managed to come out the other side still fighting!

🙂

Last week I started to notice further increased neuropathic pain along with increased muscle spasms while I was participating in the walking program.  On a hunch, I decided to have a blood test (looking for elevated white cell count)  to see if I might have a urinary tract infection (UTI).  The results took a few days to come in, and so I continued on with my normal workout program in addition to walking 90 steps a day.

On Monday of last week I was informed I did, in fact, have a UTI.  But I did not think it very severe at the time, so I started on a course of Cipro (a common antibiotic to kill bacterial infections) and went on about my business.

Last Wednesday, as I was mid-way through my work out, I started to get the most awful chills, shivering, perspiring on my neck, dysreflexia, and generally felt like every muscle in my body was drained of all its energy. To top it all off I re-twisted my knee that Wednesday morning while I was walking — this because I did not have left enough upper body strength to prop myself up with my elbows as I usually do.

So I decided to head home and take the rest of the day off.  But things pretty much went downhill for the next 2 to 3 days and I was hunkered down in bed just trying to survive the week. I increased my antibiotics and had the hospital staff come over to the apartment to perform bladder flushes.  A bladder flush essentially circulates saltwater into and out of your bladder for an hour in order to flush out small bacteria, which can get caught in the grooves of the bladder.

To put a cherry on top of the cake, my body decided to hit me with laryngitis as well, so by Friday I could barely speak.

😦

This past week is what the Chinese call a “Mafan” week, which means trouble, sort of like Murphy’s Law in the States.  For my regular readers who also suffer from a spinal cord injury, I’m sure you are all too familiar with the impact of a  severe UTI and how it can just knock you on your butt!

But I’m happy to report that my UTI has settled down now, and I plan to be back at the gym this week. The one major setback, aside from the UTI, is the fact that I re-injured my wonky right knee.  My knee is now very swollen again and keeps me in what seems like a constant Autonomic Dysreflexic state.  I am presently figuring out what to do about the knee … perhaps a rigid knee brace might be useful to prevent hyperextension.

In the meantime, I have grounded myself from walking again and will just be standing for the next few weeks. I know it seems like setback after setback, but Rome was not built in a day either!

For my next post, I will further update you on some of the findings my Dad has uncovered on his current “World Pain Tour!”

Regular readers will know that I suffer from recurrent, severe neuropathic pain as well as allodynia in my arms and hands that feels like having a broken glass bottle ground into my forearm.

On bad days, the pain completely derails my participation in the innovative rehab program I came to Kunming for in the first place.  And when the pain is high enough, I can’t sleep at all without prescription sleeping medication like strong benzodiazepine-class drugs.

Reducing neuropathic pain had, of course, been a secondary but nonetheless key objective of my recent neurosurgery with Dr. Liu.

The top surgery priority, of course, was to attack the large (3 cm) and growing cyst inside my spinal cord that was beginning to interfere with my breathing and likely would have had me on a ventilator within a few more months.

My breathing is fine again today, so chalk up another surgery masterpiece to Dr. Liu and his team.

Unfortunately, the frequency and severity of my pain are essentially unchanged since before surgery.

“Sometimes untethering helps with pain, and sometimes it does not.”

Great!  😦

Wonder why the untethering surgery did not reduce my pain + what else I could do now?

Well, trying to answer this question is what has recently led to both my Dad and me stepping up the amount of time and energy we devote to global pain research.

While pain research is obviously neuroscience, clinical pain management has a very different cast of investigators and academic literature compared to, say, regenerative medicine.

So upcoming blog posts will report on what we learn about better management of neuropathic pain, and eventually I’ll group the pain posts in a separate tab here, as I did for my surgery.

Today I’m just laying the groundwork.

A recent U.S. Government-funded study reported that 75% of SCI survivors suffer from long-term neuropathic pain.  But Dr. Wise Young (M.D., PhD) from Rutgers University, a renowned expert on SCI,  says that just 15% of SCI survivors suffer pain levels severe enough to be debilitating on a daily basis.

One possible explanation for this is that if the original source of the pain is not relieved within a few months, the spinal cord appears to get imprinted with pain memory that sticks even when the original source of the pain is relieved.

Maybe think of this as the dark face of neuroplasticity!

In an upcoming post, I’ll be explaining the first thing we’re going to do to see if we can at least turn down the volume on this pain memory without resorting simply to addictive painkillers.

Meanwhile, my injured right knee is well enough again for me to have resumed the walking program on a limited basis.