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 14th 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.
Hi Ali – I have been following your journey since I first learned of your story through an e-mail your father sent me a few months back. I realize the pain can be overwhelming, but hang in there as it sounds like some relief might be on the horizon. Speaking of which, I’d be curious if any of the experts your dad talked to believe that brain mapping can actually also reverse paralysis by bypassing the lesion. In any event, hang tough!
Hi Ali, it always difficult to formulate a reply to your blogs as they evoke such a mix of emotions. This one is so interesting and I have such admiration for the research you and your dad are doing. Does Neuroplasticity hold the answer to your persisting severe pain? I hope so.
I have just read some reviews of Norman Doidge’s book – all good – and have ordered it from Amazon. I look forward to reading it.
Colin and Tisi’s ol’ tutor here, sending you a hope-spree of positivity that, indeed, brain-re-mapping is your key to a new level of nirvana-on-earth. I absolutely cheer you on in believing that this is your way right now. Having sent you Jill Bolte Taylor PhD’s ground-breaking book “My Stroke of Insight: A Brain Scientist’s Personal Journey” a while ago, I am happy to read Norman Doidge’s book recommended by you — to show my own focused partnership in your healing. As your family knows, I have worked in distant healing for a long time.I partner in university and medical center research across the globe. I deeply do believe that — along with my marvelous team of docs — I healed myself WITH them, from very early BrCa, some 30 yrs ago now.
Not to be overly Pollyanna (a nickname I have been given time-and-again over this lifetime) I send you an endless, continual caring hug from Atlanta, along with some priceless words here:
“So the way forward seems to exclude hope sprees or insanity … rather, innovation looks to be what’s needed to reduce my pain enough that I’ll be able to get on with life…” wisdom by Ali
Bravo 21st century Einstein!
This is fascinating, Ali, thanks for posting. You and Ralph through this pain journey are certainly meeting some of the finest minds in the world and innovation will prevail!