I have participated in the Kunming SCI Program at Tongren Hospital for a little over one year now, and regular readers have asked me to review my experience here, as other international families are considering coming to Kunming for the SCI program.
This seems a reasonable request, and maybe even overdue on my part.
So here goes.
I’ve decided to offer a multi-segment blog review over the next few weeks, covering my own experience with topics ranging from the physical therapy program to potential for motor function recovery, to pain management and finally spinal cord surgery available here in Kunming.
I have been hesitant to sum up my experience in Kunming until I had a full year under my belt, but today I feel I can speak effectively to the pros and cons of the program.
First An Important Disclaimer
Before getting started with my review, I would like to emphasize strongly to those thinking about attending the Kunming program what many of you may already know:
Spinal cord injuries are vascular in nature, and therefore every injury is unique. This makes it especially challenging to generalize about what you might or might not gain from participating in any rehab program anywhere in the world.
When you break your back (or in my case, my neck) the damage to spinal cord neurons occurs from inflammation inside and around the spinal cord that kills off many neurons. This internal bruising chokes off nutrients to the spinal neurons, as a result of which many die. But unlike with the Peripheral Nervous System, these Central Nervous System neurons cannot grow back, as a result of which signal transmission up and down the spinal cord is seriously disrupted.
You might want to think of spinal cord injury as leaving survivors with a permanent internal bruise (actually scar tissue) that can have occurred in a 360 arc around the cord and running higher or lower that the named broken vertebra.
The bottom line simply is that no two spinal cord injuries are alike, and therefore how many neurons + their associated axons survive the injury is unique to each individual. That’s fundamentally what makes generalization about any physical therapy program or even subsequent spinal surgery so tricky to express in a helpful way.
Okay … So What’s Going on in Kunming?
I receive e-mails every week from SCI patients around the world, each asking pretty much the same question:
“Are you or the other patients in Kunming gaining strength and improved function?”
This is a particularly tricky question to answer, but I am going to tackle it head-on, as I have developed clear views on the underlying issue here.
Adaptive Behavior vs. Motor Function Recovery
A spinal cord injury survivor generally spends 1-to-3 months in hospital + a local rehab center, using either a back brace or some form of a neck brace. As a result, during the first few months after an accident many SCI patients are mostly bedbound.
Other than some light stretching, most SCI survivors do not initially engage in intensive rehabilitation, allowing time for their spinal fusion surgery to heal.
When your body remains immobile, you lose approximately 7-10% of your muscle mass per week according to the NIH. Have you ever heard the saying that it takes about six weeks to lose muscle memory and muscle mass? Well, this is what happens when you’re laid up in bed for 6 to 12 weeks. You lose most of your muscle mass.
When the typical SCI patient begins intensive rehabilitation, he or she has already lost much of their muscle mass, even in the muscles that are not paralyzed. And these atrophied muscles can be very deceiving, because they mask themselves as paralyzed after not having done any real work for so many months.
Therefore, when you start SCI rehabilitation, it can be very hard to determine whether a muscle is actually paralyzed … that is, whether there is loss of motor function or just simply muscle atrophy from lack of exercise.
Consequently, after intensive physical therapy begins and has progressed a few months, experienced clinicians and patients alike regularly confuse what is known as “adaptive behavior” with real motor function recovery.
And, indeed, it’s often hard to tell what’s going on, as the patient gets stronger and stronger and still-working muscles take on new assignments … like how I can today raise my arms over my head with no triceps!
Here’s an example:
I am a so-called “C6 complete” quadriplegic. This means I am paralyzed from the chest down, my triceps are paralyzed and my hands are paralyzed. I also have no feeling below the level of my chest. However, the muscles on the front of my arms including my shoulders, biceps, forearms and scapula muscles on my back are fully functioning.
I was laid up in the ICU in Miami for about four weeks before I was sent down to the rehabilitation center to start my rehab.
When I first arrived in rehab I could barely lift my arms up at all, which I’m fully capable of doing today. As the weeks went by, I started slowly lifting weights and doing various training exercises, and my arms started to get stronger above my level of injury.
Remember, everything below my level of injury (anything from my chest down, including triceps and hands) did not regain motor function. However, I was getting stronger and stronger and was able to shift my body on my own when I was on the mat, and I began to lift heavier and heavier weights.
This is where it becomes very easy to confuse adaptive behavior with motor function recovery. As I was gaining strength in my muscles that were not paralyzed and building muscle tone, I was also learning to adapt these muscles for practical functions they’d never handled before — like picking up my phone by twisting my wrist or lifting my arms over my head.
To a casual onlooker, it appeared as though I was starting to recover hand function, but really I just learned how to manipulate the muscles that were not paralyzed to perform new and useful functions.
After a year in Miami working out regularly 4 to 6 times a week for several hours a day, my muscles that were not paralyzed were again in tip-top shape.
However, I did NOT actually regain any motor function below my level of injury. It just looked that way.
Essentially, no muscles started firing in my hands or my stomach or my legs. This is very typical of a so-called “complete” injury, and many people do not recover any motor function below the level of injury. If you are a labeled “incomplete,” and there are more surviving axon tracks in your spinal cord, then the likelihood of improving and reconnecting workable nerve-muscle relationships is greater.
The Complete vs. Incomplete Game
A note of caution with the terms “complete” and “incomplete” —
Most doctors strike me as throwing around the term “complete” in an almost judgmental way and do their patients a consequent disservice.
So I want to make clear my view that the term “complete” does not mean what it seems to mean – as in, end-of-the-road.
Unless your spinal cord has been sliced right through by a knife or gunshot wound (in which case you’re not likely to have survived) there are surviving connections even to your lower most limbs … just not enough to get local muscles to recruit and do useful work.
Surprised to learn this?
Well, researcher Christa Moss, working in Dr. Hunter Peckham’s lab in the Department of Biomedical Engineering at world-class Case Western Reserve University in Cleveland, undertook in 2011 a study of 12 long-term “ASIA A Complete” quadriplegics and here’s what she discovered:
This discovery has potentially a lot to do with each chronic SCI patient’s potential for eventual recovery.
Right … so coming back to adaptive behavior and motor function recovery.
What I’ve Observed in Kunming
When we were researching the Kunming SCI Program back in 2012, the program’s founder and leader, Dr. Zhu Hui, explained to us that compelling the body to support itself vertically, bearing 100% of body weight, induces the brain to force new neural connections as well as to wake up dormant connections to ‘speak’ to the body’s core and eventually also to the limbs.
While this theory may have merit, I have not personally observed this to work out in practice — either for myself or for other patients I’ve met over the past year.
Nonetheless, the Kunming program offers patients the opportunity to “walk” several hours a day at least five days week, which can definitely improve adaptive behavior and even potentially improve their chances of motor function recovery from surviving axon tracks.
From my personal experience, I believe adaptive behavior is still frequently confused with motor function recovery. Many of the patients who have joined this program in the past year have been injured from several months to several years, during which time many of them have never engaged in structured rehabilitation or even meaningful exercise of any kind.
So, when new patients enroll in the program here in Kunming, many of them are de-conditioned and very weak. But after just several weeks one can notice great improvement in their balance, ability to use their upper body, etc.
I have observed closely many SCI patients here in Kunming over the course of the past year, and as I speak Chinese I’ve interviewed them as well.
Today I feel confident in reporting that the Kunming program is inexpensive compared to many Western rehabilitation programs, and a SCI survivor can work out several hours a day to get strong again as well as to stay healthy and fit.
However, apparent improvements in motor function appear to me to be for the most part attributable to adaptive behavior, especially for chronic SCI patients.
Working out daily alongside dozens of the “complete” quadriplegic and paraplegic patients over the last year, I have NOT observed improvement in motor function in chronic SCI patients. This is not to say that SCI motor function recovery is not possible, but just that I have not observed this outcome.
Better Outcomes for Acute Patients
On the other hand, I have observed several “acute” SCI patients (with so-called incomplete injuries from one month to one year old) gain meaningful motor function recovery. As I said earlier, every patient is unique, and the outcome depends on a combination of how many axon tracks survived the injury and how hard the patient works at rehab.
Being “incomplete” and only recently injured makes a big difference in the outcomes here in Kunming, as it does anywhere else in the world.
Further, I have noticed that the program here seems to benefit chronic paraplegic patients slightly more than quadriplegics patients. Paraplegics are able to hold themselves up on the Kunming walking frame and really work on improving their adaptive behavior and balance. It is a little more challenging for quadriplegics with no upper body strength, because we cannot hold ourselves safely up in the Kunming walker without substantial assistance.
Summing up this first installment on my Kunming experience … I recommend the Kunming SCI Program as a general all-around SCI rehab program for many SCI patients because it is really hard to find an affordable, dedicated SCI rehab program in the North America or Europe where one can work out vigorously in a dedicated facility multiple hours a day up to six days a week for months on end.
With respect to attending the Kunming program to regain motor function, from my observations I cannot in good faith encourage fellow SCI survivors to come here with high expectations for motor function recovery.
That being said, perhaps some combination of an as-yet-unproven regenerative medicine therapy combined with rigorous Kunming-style rehabilitation may turn out to be the ideal combination for meaningful motor function improvement.
In my next blog post, I will dive into the topic of actual physical therapy practices at Tongren Hospital as well as the difference between in physical therapy in China versus in Western countries.
Hi Ali, what an intelligent useful blog, and I am only sorry that your pain continues so much that your spirit has trouble sometimes,overcoming your great ability to focus on other things. love Nick
thank you ali
Thanks, Ali for this well worded and clear evaluation of this program. I share this with many medical friends and family and your evaluation means a lot! The realities are clear and although we all haves dreams hopes and expectations your view is reality based! Thanks for sharing and keep inspiring us!!! hugs, Barbara
Ali, thank you for sharing this very important, insightful report of your program and progress. Now what about getting an electrical stimulator implanted in your spine and then continue this journey in the China Walking Program? Either way I am still awestruck with your journey – you are amazing! lol caroline
Hey, why does Ingersoll answer my emails? Tiff, ralph, uschi, mattias,ali DID TIFFANY FORWARD INFORMATION RALPH OR ALI ABOUT *Dr. Akhilesh Sharma.* *Signed,*