Kunming Walking Program Summing Up

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Summing Up

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.

  1. Surgery Outcome
  2. SCI Rehab Program
  3. Life in Kunming
  4. Remaining Pain Challenges

Successful Surgery

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.

Conclusion

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.

 

 

Taking a Few Days-Off Here in Kunming

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It is been well over a year since I have taken more than a day off from the Kunming SCI program … that is, taking off time from rehab just for fun and not solely on account of pain or other medical issues.

So last week I decided to play hooky from the rehab program on account of my sister, Tiffany, having come all the way from Raleigh, North Carolina to visit me.

Jenny Liao, our trusted Kunming administrative assistant and now very good friend, made us a happy threesome.

So Tiffany, Jenny and I headed out into center city Kunming to do some shopping, have lunch together and to go explore generally.

Most of the pictures that accompany this post are pretty self-explanatory, but we did find our way in several little novelty shops with “Chinese characteristics” as the popular saying goes!

And, as you can see, we even discovered a local branch of the American Toys R’ Us. Great move on their part, as the Chinese are equally crazy about toys and about spoiling their really adorable children.

When we entered the big Toys R Us, you could see right away the sales staff were wondering what on earth we were doing there. Well, in short, we’d come to play!

:)

When my sister comes to visit, it seems we always revert back to our teenage selves. Why not? Beats current reality by miles!

 

Jul03_2      Pic of Tiff (sister) and me out yesterday

Sisterly Love

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Chinese Shopping Plaza

 

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Right in the middle of a shopping mall!

 

Jul03_8

Boys will be boys? Well, girls will be girls …

 

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Never too old to play Spiderman!

 

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Jenny and Tiffany at “hide and seek”


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Hehe … I couldn’t resist!

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Middle of a shopping mall is a huge pool with goldfish.

… Where adults + children can go fishing!

 

Changing Topics … Fear of Dentists!

I mentioned in one of my previous blogs that a porcelain tooth inlay had fallen out about a month ago, and a local dentist actually came to my apartment to glue it back in … twice!

You really get one-on-one service here in Kunming, and my dentist even came over with his assistant late one night when I was in bed to help me out after the inlay came out a second time. I doubt you would find dental service like that anywhere else in the world.

Anyway, my dentist convinced me that it would be best to replace the inlay with a stronger traditional crown. I struggled for days with this decision, because I am quite terrified of going to the dentist and had never had a crown before.

Indeed, I am so terrified of any dentist that when I did decide to go ahead with the crown I had my sister hold my hand the whole time and sing me songs. No, I’m not kidding!

Dentist at the house

Home Dental Service

(Daytime Session)

 Bedside Dental Service

Again … at night in bed!

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All Smiles in Dental Office

I know this is hard to believe, but I think I was less scared going into spinal surgery last year than I was over getting a crown fitted last week.

Cool as a cucumber I was when rolled into the Tongren Hospital operating room for my spinal cord surgery, but I had to take a pain killer (Tramadol) in order to feel slightly loopy to go to the dentist last week. I guess there’s something about that drilling sound in my head that rattles me psychologically every time.

Anyway, actually getting into the dentist and transferred into the dental chair was quite a challenge on its own right, even with Tiffany + Jenny + Shao-Lin + Shao-Yin all skillfully assisting.

We had to overcome multiple steps, narrow doorways and then there was the hurdle of actually transferring me into the dentist’s chair. As there were no lower side rails on the chair, we even had to tie my legs together so I didn’t fall out.

 

:-)

My young dentist is very skilled … quite a superstar in my book. What I did find rather hilarious was that at the end of the dentist’s ground floor office there is a huge glass window, so when I transferred into the dental chair passersby outside on the sidewalk could walk up to the glass and watch the procedure!

China … no problem … everyone’s very curious about many things!

Okay … that’s it for today.

Looking Ahead …

I’ll take the next few weeks to sum up thoughtfully the multiple Kunming Walking Program blogs I have written over the past two months in order to offer to prospective international participants the clearest possible picture based on my personal experience here.

Going forward, I am thinking about shifting my blog focus to be primarily educational and informative with respect to a wide range of SCI issues and challenges that I, in addition to many other SCI survivors, deal with on a regular basis.

I regularly receive e-mails from blog readers who have been reporting that from my blog they are frequently learning new things about spinal cord injury and suggesting they would welcome anything further I think would be of community interest.

So, while I may still do personal blog posts from time to time to keep you up-to-date with what’s going on with me in China, I hope to have a general practical focus on making this blog a useful SCI educational site.

If readers have any comments or particular suggestions on other issues I should focus on, please feel free to e-mail me directly (ali@ingersoll.org) or via my blog.

Cheers!

Kunming Walking Program – Post-Surgical Chronic Pain Explained

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As many of my regular readers will recall, last year I developed very serious post-surgical chronic neck pain that extends from the base of my neck, across my right shoulder, down my right arm and clear through to the fingers of my right hand.

Muscles2

The pain in my right shoulder and arm feels like a sharp steak knife cutting into my flesh and varies between simply painful to being so intense at times that I have to go to bed in the middle of the day to try to get my mind off the pain.

Chronic post-surgical pain was for me a wholly unanticipated outcome, so we’ve given a lot of thought to possible explanations and to whether or not there might be some way of correcting the problem.

Initially, we thought that scar tissue on peripheral nerves nearby the surgery incision area might have formed and be pushing against several major nerves in the vicinity of where these major nerve bundles enter the spinal cord. Descriptions of compressed nerves sound to me quite similar to what I’ve been experiencing.

For many months I was needlessly further distressed because the neurosurgeons at Tongren Hospital here in Kunming insisted that what I was experiencing was not a normal consequence of their work, and they could not offer any possible explanation for what had obviously happened to me.

So at the end of last year, my Dad switched his neuroscience research focus from primarily regenerative medicine to pain management research and clinical options for me.

Over the last few weeks Dad has again been traveling to different countries in Europe and North America and has interviewed highly experienced neurosurgeons, with special thanks to the world-class neurosurgical team at Indiana University.

As it turns out, Dad has learned that acute post-surgical peripheral nerve pain is not as uncommon as we had originally thought.

Plainly there are always risks when opening up the spinal cord, and experienced neurosurgeons advise against any kind of cord surgery unless absolutely essential – this because operating on the spinal cord frequently results in “unintended consequences” … no kidding!

A common enough result of operating on the actual spinal cord, as opposed to just repairing vertebral bone damage, is that nerve tissue gets stretched at the intersection where major peripheral sensory nerves enter the central nervous system.

How’s This Work?

Certain readers may be interested in how major peripheral sensory nerve bundles enter and get spliced into the spinal cord … and how any type of spinal surgery can affect these spinal nerves on a permanent basis, sometimes leaving the patient in chronic pain for years.

From the diagram below you can see there are two blue tube-like structures that enter the spinal cord on the left and right … these are called the dorsal root ganglia. The dorsal root ganglia feed mostly sensory nerve roots/fibers directly into the spinal cord.

On the diagram I have circled in green the area where I had my laminectomy, which means cutting away vertebral bone to access the spinal cord.

In my case, entering the cord was necessary to remove large fluid-filled cysts (circled in red) that were growing quickly and ascending into areas above my original C-6 injury to choke off nerve control of my breathing.

Performing a laminectomy and then cutting open the Dura Mater to gain direct access to the ventral (front) side of the spinal canal has clear potential to stretch the nerve fibers inside the spinal cord.

This is because the cord itself has to be pushed hard over to one side to enable access to a ventral cyst when the surgeon has entered the spinal column from behind.

The problem with this is that once a patient has been “sewn” back up, some of the spinal nerves remain stretched and do not return in their original positions.

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Another view of how the spinal nerves enter the spinal cord through the dorsal root ganglion

As some readers may be able to imagine, stretching major peripheral sensory nerve tracts where they splice the spinal cord risks serious consequences for the patient.

It is quite common that this stretching of sensory nerves can result severe post-surgical nerve pain, as has happened to me. Some patients report a reduction in the intensity of pain over the course of a year or two, but it’s not yet clear to me if the throbbing pain ever quite goes away. But that’s my hope … that over time the stretched nerves will reposition themselves.

As for pain levels, I would say my neck/shoulder pain varied between 8 and 9 every single day for the first eight months after surgery in May 2013, and today, a year later, pain levels have receded a little, back to a 7 or 8 depending on my sitting position.

For instance, it is much more comfortable for me to sit in my power wheelchair because I can recline the back rest as opposed to my manual chair that sits me in a constant upright position, causing pretty constant agony.

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An illustration of the complex pathways of Spinal Nerves

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A global picture of how the dorsal root ganglion fits into the spinal vertebrae

Once I learned from Dad’s recent investigations the likely reason for my chronic neck pain, somehow this helped me in dealing with the issue, because in my particular situation the operation that resulted in the neck pain was absolutely essential for survival.

Indeed, by the time of my surgery a year ago here in Kunming, I was already having serious trouble breathing, so surgery for me was life-critical.

I just wish the Kunming surgeons had been more forthcoming and alerted me to the potential side effect of severe post-surgical neck pain so I did not spend so many months after surgery thinking I was losing my mind.

In all these circumstances, I do accept the risks and “unintended consequences” that always come along with spinal surgery. Frankly, though, I find it extremely hard to accept that my surgeons told me point-blank and repeatedly that they had never ever before had any patient report the kind of pain I had complained about for so many months.

This may be due to the cultural differences in pain culture that
was discussed briefly in a prior blog post. Maybe so.

Post-Laminectomy Syndrome

However, a few months ago I met in Kunming a Sri Lankan patient who is paraplegic, and he, too, had come here for spinal cord surgery to remove multiple cysts in his spinal cord canal.

This fellow is today back home in Sri Lanka, but I’ve learned he has been repeatedly calling Tongren Hospital to complain about chronic thoracic pain that is so debilitating he can no longer work.

There is an actual name for this pain issue. It’s called “Post-Laminectomy Syndrome.”

The bottom line is that spinal surgery is sometimes essential for survival, but the risks need to be made known to the patient before surgery and critically evaluated.

It is reported that as many as 75% of spinal cord injury patients end up with some type of spinal cyst of varying size. This results from internal cord scar tissue impeding the free circulation of Cerebral Spinal Fluid (“CSF”).

However, I have concluded that unless the cyst is actually affecting motor function or critical organs, then I would think twice about having a cyst removed.

From bitter experience, I can tell you that having severe chronic neck pain and barely being able to sit up in a manual wheelchair is another challenge that could and should be avoided by spinal cord injury survivors who do not absolutely need to have this surgery.

Looking Ahead + Summing Up

In my next blog post, I will sum up the last dozen posts on the Kunming spinal cord injury program – this for the particular benefit of fellow spinal cord injury survivors who may be thinking about travelling to Kunming, either for surgery or to participate in the Kunming Walking Program.

 

Post-Operative Spinal Surgery Nightmare

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Disclaimer:

I’m going to be discussing my post-operative spinal surgery care today, and while this is not for the faint of heart, in response to readers’ persistent questions I’m relating what actually happened.

In fairness, since my surgery several other foreign patients have undergone spinal surgery at the Tongren Hospital, and the staff here seem to have learned from my experience, significantly improving post-operative pain management protocols.

Firstly, I think it may be important to set the stage by discussing the “culture of pain” in terms of East versus the West.

In developed Western developed, complaining about pain is practically encouraged, as this seems to offer pharmaceutical companies many opportunities to produce drugs to address a great variety of types of pain.

When people are in acute pain, as in post-surgery, there are many pharmaceutical options to alleviate the pain, at least short term, and it is pretty standard practice to work with a pain specialist before and after surgery to create a post-surgery pain plan.

In contrast with this perspective, the situation in China is quite different. In China, especially for the generation who lived through the Cultural Revolution 40 years ago, acknowledging pain is considered a sign of weakness, and pain is generally not discussed with medical staff.

I have spoken directly with many Chinese about the concept of pain, and the younger generation definitely vocalizes pain issues more freely.   On the other hand, the older generation, including my neurosurgeons, grew up in an era when you pretty much kept perception of pain to yourself, and their answers to my questions reflect this stoic mindset.

I am sure there have been many thousands of Chinese SCI patients before me who underwent spinal cord surgery and experienced intense acute pain afterwards, but out of respect for their doctors they did not complain about their pain, and thus the doctors seem not to have developed an appreciation of the issue.

In the West it is pretty standard to question your doctor and his or her methods as well as to independently research your particular ailment. In China, by way of contrast, this is not the “norm” and as a general rule patients blindly trust their doctors, and especially their surgeons.

Our (Flawed) Pre-Surgery Due Diligence

In advance of my surgery my brother Mattias and Dad did question my surgical team about post surgical pain management and were assured that pain drugs would be administered.

Thereafter most of the discussion focused on my neurosurgical team’s pride in having recruited the just-retired head of anesthesiology of Kunming Medical School to personally manage on my surgical anesthesia. Thankfully, there were no issues with the general anesthesia.

I do take some responsibility for what I’m about to describe because I assumed by post-operative care they intended to use either morphine or Fentanyl — a synthetic 3x stronger than morphine.

Oh boy, did I ever come to regret not doing a little bit more research on pain management protocols here at Tongren Hospital before the surgery and, specifically, for not having asked what drugs they planned to use on me.

Bound + Gagged …

After successful surgery I was wheeled into the ICU where my family was told that they would not be allowed to visit me for the next 24 hours because I needed to rest.

Well …

I woke up in the ICU and immediately started feeling like somebody was slicing open my spinal cord as if they had not finished the surgery. Unfortunately, no one had told me that when I woke up from surgery I would still be intubated — meaning the anesthesia breathing tube had been intentionally left inserted down my throat. Needless to say, I was unable to speak, being only able to moan and cry from the savage severity of my pain.

My hands flailed frantically in the air as I tried screaming through the intubation tube, while hitting doctors and nurses left and right to signal to them that I needed to speak. I did not think they had properly sewn up my neck as the pain was like nothing I had ever felt before.

I don’t know how many minutes or even hours passed of me moaning and hitting people, but finally the staff took some sort of purple string and literally tied my wrists to the railings of the bed. I remember this vividly, as if it had happened only yesterday.

I was hysterical, but I must have passed out after a while from the sheer shock of the pain because the next thing I remember was the intubation quickly being pulled out of my throat, the strings being cut after binding me to the bed even as my brother forced his way into the ICU. I felt like they were scampering to hide evidence of an ICU torture chamber before my brother and mother discovered how they’d restrained me.

Apparently, I was making such a scene in the ICU and as they did not know what to do with me they had called up my brother and mom to see if they could calm me down. The instant after they took out the intubation tube, I was complaining and crying that the pain was absolutely unbearable.

Now, mind you, I’ve been living with severe neuropathic pain for quite some time and have a pretty high pain threshold. So, for me to complain about pain I imagine it must have been pretty extreme.

Situation gets still worse …

My family asked what kind of pain drugs the hospital were administering to me through the IV and were astonished to discover that I was only being offered ibuprofen! Crazy I know … after spinal surgery only to be given ibuprofen?!?

My family, understandably outraged, demanded that they switch immediately to morphine to get the pain under some semblance of control.

Also, my brother insisted that I be moved out of the ICU and down to the seventh floor spinal cord injury unit to my room so that at least one immediate family member could stay with me round-the-clock over the next few days.

I can’t remember if it was a day or two or three, but the pain was definitely not abating and they were claiming to have been giving me 8 mg of morphine per hour.  To put readers in the picture here, 8 mg of morphine per hour would have knocked me out or caused me to start hallucinating, so clearly we were missing something.

It was only after my brother Mattias leaned really hard on the staff that we discovered what was really going on with my medication. Chinese physicians generally have an aversion to the use of morphine, and sometimes they may also cut costs by diluting drugs. In any event, a junior nurse revealed to me in the middle of the night that, yes, the morphine being administered to me had been diluted.

All Hell broke loose again … Mattias was so angry he was intermittently speechless with rage, as he has opted to sleep with me and had thereby himself suffered a succession of sleepless nights as I moaned and screamed.

Perhaps fearing Mattias might assault a member of staff (I’ve ever seen my brother so angry) the medical team changed course and the morphine pump was suddenly filled with the real thing. But this was crazy, as the 8 mg/hour pump setting had not been reset.

So I started hallucinating and seeing spiders crawling down my wall in addition to the walls melting … and my blood oxygen saturation collapsed suddenly to 70% from a reference normal 98%, leaving me gasping for breath.

I do remember asking Mattias to make sure I didn’t get eaten by the spiders.

After a few days of back-and-forth we finally got the morphine dosing cut very sharply, but we overshot the mark and then the pain returned with a vengeance.

My Dad spoke urgently with surgeons in the United States and Australian, and finally an Australian military surgeon offered battlefield triage advice on how to use what medications we had on hand at the apartment for painkilling purposes. And they came up with a “cocktail” comprised of morphine sulfate and diazepam (Valium) that worked wonders.

After about seven days I was able to go home and rest for the next few weeks.

Truth be told, I remember the exact hours after the ICU very vividly, but much of the rest of the seven days in the hospital was a blur. I think my brain shut out much of that that experience because the pain levels were just intolerable.

I have to give all the credit to my family because they stayed up with me 24 hours a day, 7 days a week making sure that I survived this ordeal.

I have had several nightmare ICU experiences before this one, and I’ve a hunch that every SCI patient probably has an equally terrifying story, so we were prepared for almost every scenario except the one we encountered.

:(

So I turned out to have been the pioneer … the one with the arrows in her back!

But I’m past this now, being grateful simply to have survived and focusing on getting on with life and on my vision for how to put my uninjured brain to productive work as a professional trader.

Nonetheless, I encourage all hospital patients to question everything imaginable and try to assess independently what would be an acceptable standard of care. In my case, post-surgical ibuprophen didn’t cut it, and Tongren Hospital seems to have learned about as much as myself from my bizarre experience.

In conclusion, I will say that Tongren Hospital now administer much stronger pain meds to spinal surgery patients, and I have not heard of any more cases of nurses tying patients to hospital beds or diluting drugs.

 

Kunming Walking Program (Part 3) – Spinal Surgery (1)

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I apologize that it has taken me two weeks to post the third installment of my anniversary analysis of my experience here in Kunming, China.

Unfortunately, I developed another pressure sore, so I was stuck in bed for a week flipping back and forth. To add insult to injury, one of my porcelain tooth inlays fell out. Believe-it-or-not, my amazing friend Jenny managed to arrange for a city-center dentist to come all the way down to my apartment to glue the tooth back together!

As you can see from the picture it was a comedic/terrifying event, albeit the tooth has been reset quite unevenly and will have to be rebuilt with a crown. But how extraordinary that a busy dentist here in China could be persuaded to make a house call …

:)

Dentist

At-Home Dental Office!

Today I’ll focus on spinal cord surgery at Tongren Hospital and on the personal experience I had here a year ago in May 2013.

In fact, I’ve decided to break my report on surgery into three sequential blog entries, otherwise you might be reading for a couple hours today:

  1. Spinal surgery
  2. Immediate post-operative care
  3. Long-term post-surgical complications

It is quite common for spinal cord injury patients to develop over time one or more internal spinal cord cysts. Some SCI patients go their entire lives without realizing they have cysts, but they are lucky that these fluid-filled cysts do not affect their daily lives. Unfortunately, I was not so lucky.

About six months before I moved to Kunming, an MRI revealed that I had at least one large “arachnoid cyst” wedged between the Dura mater and my spinal cord. We sent my MRI to several neurosurgeons, who expressed different views on whether my cyst was affecting motor function, breathing and whether or not my spinal cord was actually tethered, which is quite common for many SCI patients. Several neurosurgeons claim not to have observed anything, and one even said the cyst was growing inside my spinal cord!

In much of the world, neurosurgeons decline to operate inside the Dura mater, especially for those patients judged to have “complete” injuries. These surgeons seem to feel that most SCI patients will not regain motor function after surgery, and, therefore, the so-called Standard-of-Care is only to secure the broken vertebrae in what is known as a “spinal fusion” – which is essentially an orthopedic procedure that mechanically reinforces the spinal column but does not involve dealing with the internal spinal cord inflammation, which is actually the main reason so many neurons die off during the days immediately after injury.

My Dad, ever the detective and usually unimpressed by much of what passes for conventional wisdom in the medical world, flew over to Kunming multiple times to meet Chinese neurosurgeons, first at the Peoples Liberation Army hospital and later at the private Tongren Hospital to discuss my case.

In particular, he focused on two doctors who have decades of experience with thousands of spinal surgeries and have removed all sorts of cysts within the spinal cord as well as performing un-tethering surgeries for patients. They have both recently retired from military service and taken up appointments at the private Tongren hospital.

By the time I finally arrived in Kunming in March 2013, the largest of my spinal cysts was growing rapidly and ascending into the C4 area … and was beginning to choke off my breathing!

So I definitely needed spinal surgery, and it appeared to us that this Chinese team had the most experience with my particular problem, which had become life-threatening.

My Kunming medical team leadership (Drs. Liu Yansheng and Zhu Hui) concluded that the combination of my “tethered” spinal cord + a 3.5 cm fluid-filled cyst growing on the anterior (front) side of my spinal cord (running from C-4 down to my C-7 vertebra) needed to be dealt with urgently, alone for me to regain control of my breathing.  Further, there was MRI evidence that the rising internal pressure was also causing further degeneration of surviving tissue inside my spinal cord.

The surgery proposed turned out to be seriously tricky because the cyst was on the anterior (front) side of my spinal cord, whereas surgical access is only possible from the back side … known as dorsal entry.

This means that between the point of surgical entry and access to the cyst no less than three intact vertebrae had to be cut away, but also the actual spinal cord itself was in the way.  Some obstacle course!

We have learned that few neurosurgeons anywhere in the world have working experience with a procedure this complex — some would say even “daring” – and even fewer apparently would be willing to attempt it, especially in the United States with lawyers and insurance companies complicating doctors’ work.

Cervical Vertebrae

Cervical Vertebrae

Anyway, the objective was to reach the fluid-filled cyst on the anterior (front) side of my spinal cord in order to cut it open and drain the fluid, thereby decompressing my spinal cord.

My 2010 spinal fusion in Miami had involved screwing a metal plate between the C-5 vertebra and C-7 vertebra, because my C-6 vertebra burst in the diving accident.  Therefore, access to my anterior cyst was blocked on the ventral (front) side of my spinal column due to the metal plate being in the way.  So Dr. Liu had to access the cyst from the back side – “dorsal entry.”

To gain access to my spinal cord, the surgeon needed to create as wide an opening as possible.  This surgical procedure is known as a “laminectomy” because it involves removal of as much as possible of the lamina (bone) on both sides.  However, because a major artery passes through the articular process on either side of the lamina, there’s a limit to how far the surgeon can go – roughly indicated by the angled green lines shown above.

And successfully executing this triple laminectomy was just the “easy part” … :)

Next, lead neurosurgeon (of the four altogether who worked on me) Dr. Liu Yansheng had to decide whether, after opening the Dura mater, to approach the cyst by making his way to the left or right around my spinal cord. He decided to go right, then cutting through ligaments that hold the spinal cord centered, pushing aside my spinal cord very, very gently as he went along.  I hope the following illustration gives you some idea of what’s involved here.

Vertebra Cross Section

Vertebra Cross Section

Vertebra Cross Section

Now came the super tricky bit … absolutely no room for error here or I would have been toast.

:)

Once Dr. Liu worked his way round to the cyst, which turned out to be relatively much larger than illustrated here, occupying half my spinal canal, he could not simply remove it because of the risk of tearing the Pia mater that encloses what remains of my spinal cord.

So he had to cut the cyst longitudinally, sort of like slitting a balloon so it can never again hold water. Once he was inside the Dura mater, he also discovered a couple more small cysts (a type called a syrinx) that had grown just inside the surface of the Pia mater, which had not been revealed in the MRI. Dr. Liu had to delicately lance this cyst, taking extreme care not to further damage my spinal cord, of which he estimated about 30% remains healthy.

Along the way, Dr. Liu also scraped away and removed scar tissue from my original injury, thereby “untethering” my spinal cord and restoring CSF (“Cerebral Spinal Fluid”) circulation.

Dr. Xu Xiao-Ming, Professor of Neurological Surgery at Indiana University, expresses the strategic surgical concept as follows:  “The key goal here is restoration of spinal morphology.”

Put another way, the goal was to restore my spinal cord as close as possible to its original design and orientation within the spinal canal.  That means my spinal cord would no longer be compressed by the large cyst nor would it tethered by strands of scar tissue left behind from my original spinal fusion surgery.

Instead, my spinal cord would be floating free again with full CSF circulation — free once again, as Dr. Zhu Hui expresses it more poetically,  to “dance” with the rhythms of my heartbeat and breathing.

:)

After the cyst had been cut and tethering scar tissue removed, the Dura mater was sutured back together.  Key here is that the Dura Mater not leak CSF after it is sewed back together!

Finally, there’s an obvious need to build a frame around the access “door” had been cut open to access my spinal cord.  This required the installation of titanium rods and screws – two vertical rods and one horizontal rod to provide lateral rigidity, held in place by six screws.

Then my neck muscles were pulled back over the titanium framework, and finally the surgeons sutured my skin back in place.

Summing up:

The surgery could not have gone more smoothly and, in my opinion, it was a remarkable success.

Indeed, given how fast my breathing was failing just one year ago, I can highly recommend patients who are have cysts, tethering issues, or any other spinal cord complication to come to Kunming to work with Dr. Zhu and Dr. Liu for surgery. I really had a world-class surgical team, and I don’t think you will find better or more experienced neurosurgeons anywhere in the world.

While I am an enthusiastic advocate for spinal surgery here in Kunming, full disclosure requires that I devote the next two blog posts to also discussing my immediate postsurgical care and some of the nightmares we had to endure in addition to long-term postsurgical challenges I have undergone over the past year. So this is a complicated story that I’ll lay out as clearly as possible.

 

Surgery Pictures

For readers who missed my earlier blog entry with the surgery pictures, I have included illustrations below courtesy of one of my physical therapists who routinely photographs and videos major surgical procedures in Kunming

Surgery 6

The surgical team getting ready for surgery

Surgery2

This diagram illustrates the numerous layers surrounding the spinal cord.  Dr. Liu had to drill away the bone of three vertebral lamina (C-5 through C-7) to gain wide “barn door” access to my spinal cord.  Then in order to secure my spinal column at the end of the surgery, Dr. Liu used part of the vertebrae he had cut away, crushed up to make a sort of mortar, to reinforce positioning of the three titanium rods and six screws he used to stabilize my spinal column.

Surgery 3

Before the dura mater is opened … this is the scene

Surgery 1

First a small puncture of the dura mater … and gusher!

Surgery 4

The dura mater is now wide open, exposing the pia mater in order to gain access to the arachnoid cyst on the anterior side of the pia mater, and also revealing 2 small syrinx cysts just inside of the pia mater that were successfully drained.

Surgery5

My surgical team deep in concentration

Finally, there are two videos taken during my surgery. I have decided to post these on YouTube because they serve to illustrate a very important outcome of the surgery that could not be seen in a still photograph.

In the first video, note carefully that my spinal cord is not moving at all, being literally stuck in place by scar tissue and wedged in tightly by the big (3.5 cm) cyst.

Also very much worth observing is the absence of blood.  Dr. Liu is one of the very top neurosurgeons in the world, and his mantra is “no blood” when working on an open spinal cord.   On top of the Pia mater, you can actually see the tiny, delicate blood vessels that supply the spinal cord, and none of these have been nicked.  I lost virtually no blood during the entire surgery.

In the second video, after the team have surgically drained the big cyst and cleared out the scar tissue, you can actually see that my spinal cord has started beating again in rhythm with my heartbeat.  I learned that your spinal cord is supposed to pulse naturally with your heartbeat and breathing, but mine had unfortunately been frozen in place for over two years.  :(

Video 1:  No movement of the spinal cord: http://www.youtube.com/watch?v=w2soHLDNiWY&feature=youtu.be

Video 2:  Spinal cord is again pulsing with the beat of my heart: http://youtu.be/KW2s-eOMcD0

 

FINAL NOTE: I received many e-mails from my readers asking me if I could post a few pictures of the knee brace that I have had to use for physical therapy since my leg was broken. My leg brace is made in Germany and was custom-made to fit my leg. In my opinion the Germans make the most reliable orthopedic devices.

wpid-20140609_091114.jpg                 wpid-20140609_091122.jpg

Kunming Walking Program (Part 2) – Physical Therapy

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The focus of today’s post will be physical therapy at the Kunming Walking Program. I’ll approach this challenging subject from two perspectives:

  1. Western vs. Chinese physical therapy practices
  2. My personal physical therapy experience here in Kunming

Contrasting Physical Therapy Systems

In Western Europe and North America, movement of patient limbs is typically done very slowly, the thinking being that one does not want to move joints, ligaments or muscles too quickly to avoid risk of further injury.

However, here in China the philosophy appears to involve moving limbs very quickly with sharp bursts of motion, whether stretching, massage, or weightlifting. The best explanation for this I have been able to get from the physical therapists here is that they were taught this technique in school, and they think that the faster you move the body the more blood flow rises to the surface resulting in keeping the muscles warm and perhaps faster healing.

While I can understand why with certain massage techniques there might be benefit to improving circulation throughout the body, it has been hard for me to grasp the therapeutic value of repeated abrupt movements.

Anyway, I have taught my assigned physical therapist to stretch me very slowly, but it does concern me to look over toward other patients and see their paralyzed legs being violently thrown forward and backward.

Interestingly, compared to Western countries, the Chinese do not place as much emphasis on upper body weight training. With the few surviving innervated muscles we have, paraplegic and quadriplegics need to maintain upper body strength through weight training. I’m the only patient who has a daily stationary upper body weight routine in my chair.

When I do see other patients pick up the weights, they usually just fling them around in the air and have no idea what they’re doing. While the physical therapists do sometimes come over to try to help them, it is clear that there’s not much understanding here of what is really involved in weight training.

I have learned that the field of physical therapy is a relatively new area of study in China, and students attend newly-commissioned physical therapy schools where there is no real specialization in spinal cord injury. Presently there are 8 full-time therapists working in the Tongren SCI program, and throughout the year we get physical therapy students coming in for an internship for several months at a time. I don’t think many of these students have previously worked with anybody in a wheelchair, let alone understand which muscle groups are not functional when a person suffers a spinal cord injury.

To give you an example, a few months ago several of the physical therapy interns were asking about different muscle groups, and a couple of the most experienced physical therapists had trouble answering these interns’ questions. Honestly, I found this pretty astonishing, since some of the therapists have been with the program for over 10 years. I’m not quite sure they understand the concept of motor function recovery vs. adaptive behavior, basic anatomy or how different muscles are innervated.

My Kunming Experience

As many of my regular readers know, I have been unable to actually participate in the Kunming Walking Program – basically for two reasons. The first is that my leg was broken last summer and never healed correctly. The other is that peripheral nerve damage that resulted from spinal cord surgery last May has still not healed, causing me such severe pain I am unable to support myself in the walking frame. Today I’ll focus only on the broken leg, as that had to do with a physical therapy accident.

Because an SCI patient is mainly confined to a wheelchair, there is already a 60% to 80% increased chance of developing osteoporosis. This is because when you do not stand, you obviously do not bear your own weight, so standing helps prevent osteoporosis by strengthening bones and muscles.

When you are paralyzed and confined to a wheelchair, you do have the option of standing in a supportive frame or a special kind of standing wheelchair. However, in general many SCI patients do not stand, and if they do it is usually only for about an hour a day several times a week.

With the above mind, patients who join the Kunming Walking Program typically have brittle bones to begin with, so when one starts standing or assisted walking the risk of a slight fracture, break or strain are higher than one might think.

When I broke my leg, this might have been due to brittle bones.   However, I had been standing 4-5 days a week for an hour a day for the last 2 1/2 years before moving to Kunming. My point is that accidents do happen. But the pain challenges and frustration I ran into after the injury were largely unnecessary.

The local physical therapy team decided to start me in the walking program only a month after my May 2013 surgery … that is, in the beginning of June 2013.

Initially, I was okay standing stationary, but as the attending therapists pushed my legs forward, suddenly I started to feel very dysreflexic, and I began to sweat on the left side of my neck. As I discussed in earlier posts, dysreflexia is a condition suffered by SCI patients, which basically is your body’s frustrated response to pain when you do not have normal sensory feedback to your brain.

For example, if an able-bodied person broke a leg, that person would feel severe local pain at the site of the injury. In an SCI patient like me, I do not feel pain in my legs, but my injured leg sends garbled signals to my brain, which translates this input into different symptoms for every SCI patient. In my case, neuropathic pain goes skyrocketing, I sweat profusely only on the left side of my neck and my blood pressure rockets up to near-stroke levels.

So, after a few steps of forced “walking” I knew something was seriously wrong, and I asked to sit down immediately. By nightfall, my right knee was seriously swollen. I figured my body had simply not adjusted to the walking program and that I might’ve pulled a ligament or twisted a muscle.

The next day my leg was even worse, and I told the physical therapists that I wanted to get an MRI of my knee to see what was going on, never suspecting for a moment that my leg has actually been broken!

When the MRI came back, I had a meeting with the top physical therapists and program leaders here to discuss the situation, only to have them assure me there was nothing to worry about. I asked them what would have caused the swelling, and they said I most likely just had fluid buildup in my knee because I was not used to standing and walking. At the very end of the meeting, they did mention that they noticed an “old fracture” in my knee but asserted in the same breath this had occurred several years ago.

Initially I was very confused, because if I had previously broken my leg I’m sure I would’ve remembered a severe dysreflexia reaction and lots of other complications. Anyway, weeks passed but the severe dysreflexia and neuropathic pain responses did not abate. Every time I bent my knee, I started sweating profusely, crying, and was just generally a pretty miserable person. No one at Tongren was not quite sure what was going on.

After about a month of this, I’d had enough of the excruciating pain and lying in bed days at a time. And when my caregivers picked up my heel of the right leg, it bowed backward from the knee as if made of rubber!

Right Knee

(Picture of Bowed Leg)

An Independent Second Opinion

So I decided to send my MRI + subsequent X-ray images to several top orthopedic surgeons in the United States to get a second opinion.

To my astonishment, highly-confident and unqualified second opinions from top orthopedic surgeons were that I had very recently suffered a fracture of both my tibia (shinbone) and of my femur (the major upper leg bone) the two biggest bones in my body!

They asked what had been done to set the bones … what kind of cast had been fitted. I replied that no cast had been fitted!

The U.S. surgeons suggested I take another MRI about eight weeks after my leg had been broken, but they told me that unfortunately, there was nothing I could do at this point. The corrective 6-week window was closed. My leg had healed in a permanently deformed and weakened position.

These surgeons did advise that the leg could be re-broken and reset, but with the pain I went through this idea was a non-starter with me. Instead, at their suggestion, I ordered a very well designed knee brace from Germany, which I now use on a regular basis whenever I stand.

Summing up the broken leg fiasco, I would say any patient participating in the Kunming Walking Program risks some level of injury … simply straining a ligament more likely than breaking a leg. But most patients do not experience serious injuries, so far as I can see.

The challenge I had, and continue to have, is that when I did finally offer proof that my leg had actually been broken very recently during the walking program, this conclusion was met with complete denial and still is to this day! They still claim to think my leg was broken several years ago, despite all the orthopedic evidence to the contrary.

:(

A Cautionary Tale

The reason I have gone into so much detail about this whole broken leg fiasco is because I think it is directly related to physical therapy practice here in Kunming. For reference, I worked for a couple years with several top-notch physical therapists in Miami and am myself knowledgeable about anatomy and physical therapy. So, in my frank opinion, a properly trained physical therapist should have easily been able to identify a problem as serious as a broken leg!

My experience here in China is therefore a cautionary tale about physical therapy technique and safety. On the other hand, the Kunming Walking Program does offer a robust, 6-day rehab work-out for those fortunate enough not to have any mishaps in the beginning.

The physical act of standing and assisted walking provides 100% weight bearing, improves balance, especially for paraplegics, and is an overall general great form of exercise for somebody in a wheelchair. On the other hand, as I discussed at considerable length in my previous blog post, the benefit of the actual walking with respect to motor function is, in my view, no more than speculation.

The last point I want to make today is that I still have not observed any direct evidence that walking is preferred over simply standing. Weight-bearing is weight-bearing. Both activities allow you to bear weight for long periods of time, which is beneficial for every SCI patient.

In my next post I will dive into the world of spinal surgery here in Kunming.

First Anniversary – Kunming Walking Program Overview (Part 1)

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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:

http://www.ncbi.nlm.nih.gov/pubmed/21693772

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

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.