In recent blog posts I have gone into considerable detail about various aspects of my experience in China — this because readers have repeatedly asked me for as much detail as possible.
Today I’m going to offer less detail-oriented readers a summing up of my 18-month experience here in Kunming.
- Surgery Outcome
- SCI Rehab Program
- Life in Kunming
- Remaining Pain Challenges
Without the spinal cord surgery on offer in Kunming, it seems likely that I would have by now been ventilator-dependent … or dead.
The ascending, rapidly-growing cyst inside my spinal cord was successfully removed in May 2013 at Tongren Hospital by chief neurosurgeon Dr. Liu Yansheng.
While the post-surgical pain management protocol used with me proved to be woefully inadequate, more recent Tongren patients confirm this serious problem has subsequently been corrected.
The Kunming SCI Rehab Program
It is possible to have mixed feelings about the so-called Kunming Walking Program, because expectations figure so importantly into anyone’s feelings.
I have seen no evidence that the Kunming SCI rehab program results in neurological motor function recovery in chronic SCI patients.
On the other hand, I have seen evidence that the Kunming SCI rehab program builds muscle mass and strength for even chronic patients who work hard at the program.
Improved muscle mass and tone, in turn, frequently lead to enhanced adaptive behavior that can mimic neurological recovery. I’ve treated this subject at considerable length in an earlier post, but for now let’s just sum up by noting that improvements in adaptive behaviour, while very useful to SCI survivors, are often mistakenly confused with motor function recovery.
On the other hand, here in Kunming I have quite frequently witnessed functional improvements with acute SCI patients. This may be on account of adaptive behavior or neurological recovery or some combination of the two. It is obviously impossible to assess how these acute patients would have recovered without the local rehab program.
Life in Kunming
Putting medical challenges to one side, life in Kunming has been very agreeable. And this is not just because of the delightful climate, rather also because the Chinese people here are just so genuinely nice.
My care-giving team (sisters-in-law in their late 30s from the Yunnan countryside) are wonderful to me, with qualities too numerous to recite in such a summary. Indeed, Shao-Lin and Shao-Yin are a major reason I’m still living here.
Yunnan Province is renowned both within China and internationally for the quality and variety of its “old China” tourist attractions, and our periodic overseas visitors have really enjoyed the regional tours we’ve organised for them.
My Pain Issues
Regular readers know that I have been greatly troubled by persistent high levels of neuropathic pain as well as allodynia, both of which pre-date my arrival in Kunming.
The more recent neck and right shoulder pain resulted from my surgery here. We now believe this was a knowable risk of which we had not been informed and that it resulted from stretching the intersection where the dorsal root ganglia (sensory) nerves enter the spinal cord. Expert international neurosurgical advice is that this pain may resolve itself over 1-3 years, but I do not see much evidence of that.
With respect to my debilitating neuropathic pain, my Dad has devoted much of the past year to getting up to speed with the neuroscience of pain. He joined the International Association for the Study of Pain (http://www.iasp-pain.org) and has relentlessly pursued both academic and clinical leads all over the globe.
We decided against the use of pain-killing (but mind-dulling) drugs except for very occasional one-time use of Tramadol.
And we concluded that the case for implanted electronic pain management devices has yet to be proven for SCI-related neuropathic pain.
What we have decided to focus on is hypnotherapy. The objective, over time, is to alter what we reckon to be my brain’s pain map, being similar that what is believed to result in the phenomenon known as “phantom pain syndrome.”
And I have already started to work with a renowned Chicago-based hypnotherapist, Dr. Stephen Kahn, former President of the Society for Clinical and Experimental Hypnosis (www.sceh.us).
Readers who may be interested in this subject would find helpful a small book entitled “Medical Hypnosis Primer – Clinical and Research Evidence” that is available from Amazon and offers an up-to-date, succinct overview of the field.
I am already benefitting from working with Dr. Kahn, even as I accept that it will take some while for us to bring my pain levels down on a consistent basis.
The surgical outcome speaks for itself. My ascending spinal cord cyst was already impacting my breathing by the time I came to China, where neurosurgeons have more hands-on experience opening spinal cords than anywhere else in the world. Today my breathing is fine again. So I can recommend Dr. Liu and his team.
My position on the Kunming Walking Program is that its potential value to an international SCI patient depends on expectations. For that reason, among others, I am neither an advocate nor an opponent of the program. As usual “the devil is in the details” … and for details readers will have to comb back through my earlier posts.
On balance, the Kunming experience has worked out well enough for me, notwithstanding my broken leg, chronic post surgical neck pain due to surgery and a few other unanticipated challenges! I suppose those are challenges to consider in and of themselves. And while vexing pain issues still impair my life quality, the neuropathic pain did not originate in China. I will note that living in China has been more manageable for me because I am able to speak the language, which helps with everyday life here in Kunming.
In my blogs moving forward I will be focusing on educational aspects of spinal cord injury, hypnosis, Nerve transplants, etc.
An interesting summary from the blog from Ali.
Sent from my iPad