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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.

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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.

Lots to Report!

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The last few weeks have been pretty much nonstop, the highlight of which has been a treasured visit from our dear friend Ted Hearne, who took three days out of his week-long Asian business trip to come see Dad and me in Kunming.

Ted and Ali

With Ted at Kunming Intercontinental

In recent years, and especially since I broke my neck, Ted has been such an inspiration and mentor to me. This past week we spent several days in conversation ranging from Drummond Geometry technical trading to hypnosis to meditation … and even to how the ancient Chinese “I Ching” and “Tao De Ching” might help me get a better handle on my persistent, severe pain levels.

Dad + Ted Touring Kunming

Ted + Dad on Kunming Walking Tour

Charts Work With Ted

Working With Ted at Home

Spending several days in the company of Ted Hearne and my Dad was like sitting through multiple days of the most fascinating college lectures. Getting the two of them together somehow made me feel smarter by the end of Ted’s visit.

I Ching Discussion

Discussing the I Ching

Making Lunch for Ted

Garden Lunch for Ted at Home

 

Party Time for Suzanne

The following weekend we also celebrated Suzanne Edwards’ 27th birthday with a fabulous Chinese brunch at the Intercontinental hotel. The wonderful thing about this hotel is that it is completely handicap friendly, has gorgeous gardens and lovely restaurants to choose from. I have to say I did play hooky for a few days over the last two weeks … well worth it!

Suzanne 27

Suzanne’s Birthday Cheesecake!

 

On Wednesday afternoon my mother finally arrived back from the United States after an eight week trip to Miami and The Bahamas as well as to Atlanta, where my brothers and their families live.

While Mom was away I decided to take up the challenge of becoming a gourmet chef for my gluten-free, sugar-free, vegetarian Dad.

🙂

I worked out how to create menus, and then I would verbally direct my adorable Kunming caregivers on how to cook all kinds of dishes they’d never heard of before, never mind actually tasted, so they had no frame of reference.

Together we prepared a crustless (no wheat) quiche, quinoa stir fries, Italian buckwheat pasta with Parmesan cheese, homemade hummus, homemade guacamole, etc.

Salmon + Quinoa

Salmon + Quinoa

Buckwheat Noodle Entree

Buckwheat Noodles + Parmesan

A Dad Salad

Dad’s All-in Veggie Salad

Every night and day it was a new dish. I feel like it would be fun to create a cookbook called “Quad Friendly Cooking.” I always knew I was able to cook, but for most of my life I pretty much convinced myself I couldn’t cook, perhaps because other people were too willing to cook for me!

Anyway, I’m off the culinary hook for a little while now until my mother heads back to the United States or Dad goes on his next pain research trip.

I have to say it was kind of fun trying to translate how to make and bake a crustless quiche with my caregivers, who before meeting us had no experience with foreign foods, let alone having the slightest idea how to cook anything non-Chinese.

Oh, and let’s not forget having to direct all this in both Mandarin and the local Kunming dialect … what fun!

For example, Xiao-Lin and Xiao-Yin had never heard of cranberries, so we had to go in the dictionary and agree upon the word we would both understand for the use of cranberries. When we were cooking I would I maneuver my chair in such a way that I could get up close to the stove and sometimes actually cook with one hand myself.

Funny thing is … seems after injury most quadriplegic people want to learn to put on their clothes, their makeup, learn to cook, etc.  But I spent the last three years trying to get proficient at using my computer and working to develop my powers of concentration and focus on trading … so now I’m taking some new steps to become a slightly more domesticated quad. 🙂

 

On the Pain Front …

Well, unfortunately not too much good news yet on this score.  None at all, in fact.

The hyperbaric chamber protocol is still on my mind, but we are getting mixed signals on what protocol would actually be safe.

On a separate note, by the end of this month my Dad will headed back to the Netherlands and then to the United States on another major tour focused exclusively on pain.

This time he’ll also be visiting with Ted Hearne in Chicago to interview highly experienced hypnotherapists who might work with me. I am still wholly convinced that the only way my pain is can be reduced on a sustained basis without debilitating drugs is through reprogramming my brain!

Meanwhile, at Ted’s urging, I’ve taken up in earnest the “I Ching” … even finding a website — http://www.random.org – that can flip three coins at once for me!

On a completely separate note … I managed to accidentally poison myself again the other night. The evening started out, as many do, with my having a splitting headache, and my neck surgical injury was just killing me.

So I asked one of my caregivers to please hand me three white pills from a white bottle … to take the edge off meaning to ask for just ibuprophen, with which both the girls are familiar.

For some unknown reason, I had an orange bottle with white pills next to the ibuprofen as well. This bottle contained 50 mg tablets of the heavy-duty painkiller Tramadol. You pretty much take Tramadol after surgery for severe acute pain, not neuropathic pain. I’m not sure why I did not have the bottle in the painkiller medicine cabinet, as is our custom, but I didn’t.

Anyway, Xiao-Yin mistakenly grabbed three Tramadol … OMG!

Yes, 150 mg of Tramadol instead of 600 mg of ibuprofen.

This was on Friday night. About an hour and a half after taking the pills I started to feel extremely nauseous, very dizzy, slurring my words, and I couldn’t figure out what the hell was going on.

Struggling to focus, I looked over to my medicine table and realized what must’ve happened. As for my caregiver, it was not her fault because everything was in English, but I just lay back down on the bed shouted out to myself “You idiot, you are in for one hell of a ride tonight!”

My problem with conventional painkillers is that I become extremely nauseous, and Tramadol is a strong synthetic opiate that I would take only on those nights when the pain is so exceedingly severe that sleep is impossible.

To sum it all up, it has taken about 24 hours to get this stuff out of my system, which pretty much put me out of commission the entire day on Saturday, gazing blankly at my computer screen as if I was a 16-year-old who had just smoked marijuana for the first time. 🙂

So now I have managed to poison myself twice in 2014 — first with lithium carbonate and now a second time with Tramadol. At least this time the effects were gone within 24 hours, and I have no one to blame but myself!

 

Happy Easter!

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Happy Easter!

A few days ago I tried to explain the concept of Easter to my caregivers but without much luck. First I tried to describe the holiday as Christ rising from the grave, but seeing as they do not know much about religion, never mind Christianity, this approach was not very helpful.

I then tried to describe the Easter Bunny, little children hunting colored eggs … and marshmallow peeps.

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At least they both burst out in laughter, being not quite sure what to make of my narrative and no idea whatsoever what a marshmallow might be, never mind a marshmallow peep!

My brother Mattias and I had a long-standing marshmallow peep Easter tradition where we’d each select a marshmallow peep and put them together into the microwave. We had a competition to see how long it takes for a marshmallow peep to blow up in the microwave. The one who successfully inflates the peep without blowing it up in the microwave is the winner. The loser obviously has to clean out the marshmallow filled microwave 🙂

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In goes the Peep …

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Out comes the Peep Loser!

 

Welcoming A Really Good Friend From U.S.

This week my Dad and I will be welcoming to Kunming our mutual good friend Ted Hearne, who lives in Indiana and is presently in Asia on a business trip. Ted is one of the architects of Drummond Geometry, the technical trading methodology I use (www.Drummondgeometry.com) and Ted once lived in Shanghai for a couple years, so he’s no stranger to China.

But Ted has never visited sunny Yunnan Province and is making a detour on his current Asian business trip to come visit us in Kunming.   We’re very happy to welcome Ted and hope his couple days in Kunming will offer him a good feel for the cultural diversity of Yunnan as well as the lovely weather.

Looking ahead to Ted’s visit, I ventured out last weekend with my Dad and Jenny to check out a brand new hotel that is very close to where we live.

The new Kunming Intercontinental Hotel (http://www.ihg.com/intercontinental/hotels/gb/en/kunming/kmgyr/hoteldetail) opened just a few months ago and is only 10 minutes from us by car. I have to say I was pretty astonished to discover a Polynesian-themed tropical resort that is completely handicap accessible – handicap access being very unusual for Kunming, or for China in general, as far as that goes. I have included a few snapshots pictures below to give you an idea of this delightful addition to the Kunming cityscape.

 

Hotel Lobby2

Hotel Lobby

Indoor Infinity Pool

Indoor Infinity Pool

Jenny + Ali @ Intercontinental  Jenny + Ali

Jenny & Ali in the Lobby of the Hotel x2

No Front Door

No front Door!

Wheelchair Lake Access

Wheelchair Lake Access

So on Friday the three of us went over to the Intercontinental to check out the hotel’s Internet access for Ted and the cuisine as well as to look over the grounds.

We had lunch in a superb Chinese restaurant, where for menus the hostess presented each of us with an Apple iPad. I was confused at first, but as I pressed the screen to turn on the iPad the entire menu popped up. Not only could a guest scroll through the entire picture menu to choose dishes, with explanations in Chinese and English, but also you could enter your order on the iPad itself.

Talk about a seriously cool use for an iPad!

Oh, and extremely quad friendly as well … 🙂

iPad Screen Shot

iPad Screenshot with Toadstool on offer (Incorrect translation … what they meant was Morel mushrooms! Toadstool’s are Poisonous)

iPad Menu in Action

iPad Menu in Action with Turtle on the Menu

We enjoyed a lovely meal and a wonderful local tea and by the end of our afternoon I must say I felt like I was in an exotic hotel in Bali. Needless to say, we figured Ted would be comfortable here, and Dad completed the booking on the spot.

Pain Getting Worse Again

Unfortunately my pain is getting worse again, with severe intervals being more closely spaced in recent weeks. It’s really hard to figure out what’s going on … that is, why the roller coaster?

We just received a protocol for the barometric pressure chamber, which we will probably execute in the next few weeks.

I keep trying to find a pattern or common denominator to days when my neuropathic pain is extraordinarily high. Besides the obvious potential factors, such as excessive exercise, sitting too long in the sun or a lot of stimulation (talking or keyboarding) throughout the day … I’m still unable to find what triggers some days of neuropathic pain being so severe I’m almost comatose and can’t function at all … and some days the pain being just high but somehow tolerable.

For the moment, I’m just trying to battle through it each day, never knowing how I’ll wake up feeling or even how a day that starts out okay will end up.

Dad thinks our next best shot is hypnosis, which coincidentally was first suggested to us last year by Ted Hearne. There’s really strong medical literature on this, dating back almost a century.   Obviously the double challenge here is finding an experienced hypnotherapist in the first place and then bringing that specialist to Kunming. We have at least one lead, so more on this to come.

Meanwhile, we do have hyperbaric chambers available to us right here.

Karaoke in China!

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Thankfully “March Murphy Madness” is over!

Suzanne Edwards, who came up with this catchy turn of phrase, and I are looking forward to having an “Awesome April.”

Do you ever have one of those months where everything just seems to go completely  wrong?

Well, March pretty much did me in. I managed to not only to develop a pressure sore, my first in 3 years, but I also sustained a tissue shredding injury less than an inch away from the pressure lesion due to being handled too roughly on the hard mat at the gym.

Update on the Pain Front:

We are still waiting for the right protocol for the hyperbaric pressure chamber. However, my sister Tiffany, who is a professional SCUBA dive instructor, did some research and advised me to be very, very careful about breathing 100% oxygen under high atmospheric pressure because this can lead to numerous complications, notably including oxygen toxicity.

Otherwise, I obviously had to postpone proceeding with the hyperbaric chamber for the last few weeks due to the gym injury, but I should be up and running in the next few weeks with the pressure chamber, and I’ll keep you posted on how it goes.

My skin is pretty well healed up now, I am dealing with what I would say is the usual amount of neuropathic pain, no worse, no less, and have really been focusing on trading as of late, which also helps get my mind off the pain.

Otherwise, Dad and I have independently been investigating neurostimulator implants for neuropathic pain. This is an effective measure of last resort for some people who suffer from severe, chronic neuropathic pain.

A neurostimulator is a surgically placed device about the size of a stopwatch. It delivers mild electrical signals to the epidural space near your spine through one or more thin wires, called leads. For patients for whom this technology works, the intermittent delivery of electrical simulations serves to dampen chronic neuropathic pain.

International clinical trials of this new pain management technology are ongoing. In the Asian region, Singapore is a leading center, where some SCI survivors have had good results with implanted neurostimulators.

How It Works

Neurostimulation is believed to provide pain relief by blocking the pain messages before they reach the brain, although in fairness the ground breaking research of Drs. Ronald Melzack and Patrick Wall suggest pain transmission and brain registry of pain is more complex than a one-way street of pain signal transmission.

Anyway, the theory is that the neurostimulator sends out mild electrical impulses that reach the brain faster than the pain signal can arrive. In other words, it outsmarts your pain. Instead of pain, you feel a tingling sensation. You can adjust the strength and location of stimulation using a handheld programmer.

Wherever or not I ever have a neurotransmitter implanted, at least we now have this technology on our drawing board and are looking into the various ways this strategy might be implemented.

One neat thing about neurostimulation is that you can test it out for a week to see if you are a viable candidate for the procedure. The doctors essentially place the leads in the epidural space but don’t implant the battery box under your skin until they know you are a responder to the treatment. You can see a picture below of the different components of neural stimulation how it works.

NS

Implanted NeuroStim Device

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Neurostimulation Leads, which are inserted into the spinal column

medtronic_soletra

Neurostimulator Battery pack

On a completely separate note, I wanted to share with you a fun cultural activity here in China with which many readers may not be familiar.

On the weekends, people all over the developed world often get together and go to the movies, go to a bar, have a drink, etc.  What the Chinese enjoy best is going to a karaoke bar.

There is a national karaoke bar chain called KTV that has thousands of locations throughout the country. This is no normal karaoke bar, as there are private rooms you book with your friends to have drinks and sing karaoke. Many of these rooms are even themed with cartoon characters, superhero themes, movie themes, etc.

When I lived in Beijing about 15 years ago, I used to go karaoke all the time and wish I still had the pictures to show you. Nonetheless, one of my Kunming friends, Emma, who works at Tongren Hospital, recently went to a karaoke birthday party for a three-year-old. This three-year-old sure must have been very special because the parents rented out an entire room for the child and their friends to sing karaoke.

As you can see from the video below (apologies that the sound is not that great) karaoke is learned from a very young age and is part of a child’s upbringing. This video was too funny to pass up and so I share it with you! I have also included photos of some typical karaoke theme room pictures for you 🙂

or click: http://youtu.be/QDh-BKtsUrM to view video on YouTube

ktv

ktv.

KTV..

ktv...

 

Neuropathic Pain Updates … and around we go!

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I woke up yesterday and realized it has been about two weeks since my last post. Sorry about this and apologies for the delay.

Last week my Dad went on a scouting mission throughout the sprawling metropolis of Kunming to investigate what the local medical community knew about hyperbaric oxygen therapies.

Together with Wenjun Liao (“Jenny”) who is our translator and now very good family friend, Dad visited several major hospitals and was able to find a particular barometric oxygen pressure chamber that I would be able to slide right into.

Medical School

Chamber 1

Chamber 2

Now that we’ve successfully found a workable hyperbaric chamber in Kunming, I am waiting to hear back from my brother Mattias, who is touch with doctors in the U.S. seeking to devise a treatment protocol that would be safe and possibly effective for me. For example, we need to understand how deep I will go down, how long I will stay under and at what pressure, how many times a week to enter the chamber, how much oxygen should be administered, etc.

While barometric chambers of many sizes and designs are manufactured in China and are seemingly in pretty wide use, the concept of using such a device for neuropathic pain associated with spinal cord injury is a new idea over here.

In this regard, the particular experiments that caught our attention were carried out by a professor working at Johns Hopkins University in Baltimore, Maryland.

While I wait for the protocol details, I’m still taking the Alpha Linoic Acid (“ALA”) supplement at 600 mg daily, and I think this might be working at some level. In the last 2 to 3 weeks, for example, I would say my neuropathic pain levels have been reduced by about one or two levels from when they had been stubbornly for many months.

Now when I wake up in the morning I generally start with a neuropathic pain level of about 6 to 7 (1 = slight pain and 10 = practically unbearable pain) and generally by late afternoon the pain levels creeps back up to between an 8 to 10 depending on if there’s something irritating my body that day.

During my lithium therapy, to give you an idea, I was at a constant 9 to 10 level 24 hours a day for weeks on end. So, level 7 pain on a consistent basis over the last two weeks, while still really uncomfortable, is nonetheless a welcome reduction.

On the other hand, I cannot be sure if the very recent pain reduction is due to the ALA supplement, because I have recently also made some pretty significant changes to my diet. This is a classic example of the experimental risk of changing more than one variable at a time, but in effect that’s what I’ve done.

Here’s what’s up.

I recently finished reading a book that I highly recommend to literally anyone who can read and has the least interest in their own health. The book is titled “Grain Brain” and was written by an exceptionally experienced Florida neurologist named David Perlmutter. I have the Kindle edition, which makes reading for me really handy.

I’d already been eating pretty sensibly, being a vegetarian/vegan and staying away from any and all processed foods/refined sugars. So now I’ve decided to go gluten free and cut from my diet most sugars, even including most fruit.

Since gluten has an outsized neurological impact of which I’d been unaware before reading Dr. Perlmutter’s book, I would like to see if eliminating gluten and greatly reducing even fructose sugar has any effect on my sleep patterns, which are just terrible.

In addition, I’m interested to see if I am in fact sensitive to gluten, which may or may not affect neuropathic pain.

Interestingly, it turns most people have measurable gluten sensitivities even if they do not show immediate intestinal symptoms. Instead, the risk is longer-term neurological impact, culminating in dementia or Alzheimer’s disease. Again, I HIGHLY recommend this remarkable book.

Finally, I have just re-launched myself with Dr. Les Fehmi’s Open-Focus meditation technique. I’d gotten knocked off track during January and February on account of my horrific experience with lithium carbonate. Will keep you posted.

All-in-all, then, I’ve undertaken a number of new experiments this spring as we stay focused on trying to find workable solutions to my persistently high, and frequently debilitating, neuropathic pain.

Otherwise, things are all pretty quiet here on the China front, where recent spring weather has been summer-like. Presently I’m holding down the fort in Kunming with just my two loyal my caregivers and, of course, our much-appreciated and loved Jenny. My dad is presently in Hong Kong having a busted tooth repaired while my Mom is back in North America for some R&R.

Pain Management Attempt # ?: Yellow Submarine

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As unfortunate as it is that the Lithium protocol did not work out as anticipated, I have wasted no time moving on with several new approaches to pain management.

Alpha Lipoic Acid

The first new approach involves a supplement called Alpha Lipoic Acid, which is an antioxidant component of many foods and is also naturally made in our bodies. In recent studies, Alpha Lipoic Acid supplements have also been known to reduce pain in various kinds of neuropathy, such as often associated with Type 2 diabetes.  This includes reducing tingling and prickling throughout the body … symptoms common to my neuropathic pain. So I have just started taking 600 mg a day and will continue to do so for at least a month to see if there is benefit.

Hyperbaric Oxygen Therapy

My next neuropathic pain treatment plan is more complex.  I plan to use a medical hyperbaric oxygen chamber to simultaneously raise both atmospheric pressure on my body and oxygen saturation of my tissues.

Here is a short paper on Hyperbaric Oxygen Therapy For Neuropathy.

Hyperbaric Oxygen Chamber

therapy_dscn3812

hyperbaric_chamber_hard

 

The basic concept goes something like this:

Driving oxygen under pressure deep into tissues reduces pain symptoms.  Hyperbaric oxygen also stimulates the growth of new blood vessels, enabling the body to increase effective oxygen and nutrient delivery.

The patient breathes 100%  oxygen inside a so-called hyperbaric chamber at a pressure greater than sea level.  This device looks something like a miniature submarine.

The air we normally breathe contains 21% oxygen at sea level.  When breathing pure oxygen at pressures higher than normal, additional oxygen dissolves into the blood plasma. This results in increasing the quantity of oxygen transfer to any tissue in the body.

This past week, my parents and brother Mattias went out to dinner in Kunming with Dr. Zhu and Dr. Liu from the Tongren Hospital.  My Dad was trying to explain what we had in mind, but apparently something got lost in translation, as I learned the next day during my workout in the SCI rehab center at the hospital.

First thing in the morning I was approached by Dr. Zhu, walking unusually quickly towards me, hands waving in the air with excitement. She exclaimed that four hours south of Kunming she had just discovered very nice resort on a very deep lake that would be able to take me down several hundred feet in a submarine in order to achieve the pressure I was looking for.  Seems a lot of Chinese submarine research is conducted inland out of concerns for military secrecy.  Also, Yunnan Province is home to by far the deepest lake in China.

Anyway, I was seriously perplexed by her offer and asked why I would need to go for a submarine ride, hastening nonetheless to say how much I appreciated her effort to arrange such an adventure!

So she went on to explain in some detail how she could arrange for me to be hoisted down into the submarine and that the family would enjoy staying at the very nice resort while I went cruising with Chinese submariners.

Seriously!

I did my best to hold a straight face, and finally I worked out that she actually had not understood that I was simply looking for a medical hyperbaric oxygen chamber capable of increasing the pressure on my body as if I were SCUBA diving.

Once I worked out the correct Chinese expression for “hyperbaric oxygen chamber” she immediately started laughing and said “Oh, dear, that is much easier … several Kunming hospitals have these hyperbaric chambers. I thought you needed a submarine specifically!”

I have to admit it would have been pretty cool to have my own personal “Yellow Submarine” to take me down to the depths of a Yunnan lake.

So, next Tuesday my Dad and his Kunming assistant, Wenjun Liao (“Jenny”) are scheduled to go inspect one such facility.  If it looks okay, we’ll start trying to figure out what protocol we need to follow, and then I’m hoping to give this a try.

Meanwhile, starting this weekend I’m resuming my work with Les Fehmi’s “Open Focus” and will report back on how this is working out as I get more experience with the methodology.

On a separate note, my brother Mattias departed yesterday for Hong Kong and the United States after a wonderful visit here in Kunming.  We actually share the same birthday, March 1st, and so we had a joint birthday celebration with a Chinese banquet featuring Peking Duck.

And my two caregivers, Xiao Lin and Xiao Yin, surprised me with a beautiful birthday cake, as you can see below.  I must say, Chinese cakes are amazing, being sweeter than typical Western cakes (hard to imagine, right?) and are typically very elaborately decorated.

Home Party

Xiao Yin, My Mom, Xiao Lin & Jenny

Birthday Kids

Birthday Kids

Cake

Lithium A Bust For Me

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“Murphy” has decided recently to move in with me.  I’m trying to be as hospitable as possible, but he has a cruel sense of humor.

😦

After another five weeks on the China SCI Network Lithium protocol, I have decided to stop the therapy due to numerous side effects that were getting increasingly severe while gaining no therapeutic benefit whatsoever.

I have gone from poisoning myself with the initially-recommended (750 mg/daily) dosing to having consistent urinary tract infections, intensely sensitive skin, nausea, severely elevated neuropathic pain levels and bouts of dysreflexia shock.

If the Lithium was going to have any positive effect on my neuropathic pain, I had been told I would’ve felt it within the first 2 to 3 weeks.  This did not happen.

Perhaps the most disconcerting side effect of Lithium has been the recently extreme sensitivity of my skin, which is breaking down.

The worst challenge is that I woke up about two weeks ago with a Stage II pressure sore on my backside.  While this is a known risk for SCI survivors, I had been extremely careful not to develop such an injury and successful as well, having avoided even one incident since my November 2010 hospital discharge.

Stage I pressure sores mean that the skin is not broken but you have a red mark, which will not turn white when you push it, indicating that there is no blood flow to the skin in that area.  Stage I pressure sores usually take a few days to heal.

Unfortunately, overnight I developed a pressure sore that was already an open wound, classifying it as Stage II.

When you are paralyzed and constantly sitting on a wound, the only treatment is to get off your butt and out of your wheelchair and into bed, being turned back and forth by caregivers every few hours to reduce the pressure.

For the first week I tried to just treat the injury with ointment and rotate back and forth in my chair, but that did not cut it.  So, last Thursday I decided that I would spend at most four hours a day in my wheelchair and the rest of the time in bed shifting back and forth until this pressure sore heals up.

So I have been off my bum 20 out of the 24 hours a day for the past four days, and the sore does not seem to be getting worse, but not a whole lot better yet either.

The injury is only the size of a pencil eraser, and those inexperienced with this risk might think not to worry about such a small wound.  However, as I am sure every single one of my SCI friends knows, a tiny pressure sore can spiral out of control very quickly within one week into a life-threatening injury like the one that killed Christopher Reeve.

That’s why I’m spending 20 hours a day now in bed … will keep you updated.

Now, onto the next course of action for neuropathic pain.

Unfortunately, for me Lithium had so many serious adverse effects that I was not able to continue with my Open-Focus work to change the way my brain interprets pain signals from the rest of my body.  Now I will renew my focus on Les Fehmi’s Open-Focus therapy and see if I can get myself back on track with pain reduction.

http://www.openfocus.com/

Secondly, my Dad and I are looking into different types of neural stimulation devices that might be implanted nearby my spinal cord. These stimulation devices, for some patients, allow them to press a button, which sends a shock up their spinal cord and essentially dims down the pain signals.  In the next blog I will try to explain neural stimulation in detail.

In the meantime, my brother Mattias arrives from the United States on Tuesday.  We share a March 1st birthday, and so we plan to celebrate together.

Unfortunately, I’ll likely still be bed-ridden, so it looks like we’ll watching a lot of movies together in bed.

🙂

Lithium Round 2 – Update

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Happy Valentine’s Day!

I tried to explain the concept of Valentine’s Day to the local Chinese … but, well, no comprehension of the concept.

🙂

Now onto the Lithium update …

After initially poisoning myself with Lithium, I took a week off to clear my system  and then restarted at a lower dose … 450 mg per day rather than the 750 mg specified by the protocol.  I have been back on Lithium (carbonate) for two weeks now.

So far, the results have been acceptable. My blood serum Lithium levels have averaged above the 0.6 nmol/L minimum called for in the protocol, and the nausea I am experiencing is tolerable.

Unfortunately, my neuropathic pain has actually been worse over the last two weeks. I’m not quite sure what that is all about, but I intend to continue with the Lithium for six weeks as specified in Wise Young’s clinical trial paper that I posted a few ago.  In case readers want a fresh look, here’s the link to the paper:

China2011_Lithium_Trial

If we do not have any success with Lithium, my Dad and I are now strategizing Plans B, C and D.

I keep reading about patients all over the world dealing with from neuropathic pain, but every individual is unique, so I may have to keep trying new things until we find a solution.

Otherwise, things are pretty slow here in Kunming right now. So it will be great to have Suzanne Edwards coming back from England in the next few days to rejoin the program.

As Chinese cities are not generally very handicap accessible, I tend to spend most my time at the gym or at home, either reading or working at my PC.  There are days when I think I may be going crazy, but I just remind myself that for the next year in China I’m attempting to put myself through a PhD trading program.  Every PhD candidate I have ever known spends a year or two locked in their office or lab working continuously.

For diversion, I’m enjoying a series of online video courses on particle physics and quantum mechanics.  I’ve always had a general interest in physics, but recently I’ve developed a keen fascination with how the universe works, from the smallest unit of matter to the mystery of black holes and dark matter.

In this regard, there is a terrific company called The Great Courses where you can purchase audio or video courses on a wide range of subjects.  Each session is about 30 minutes,  which makes the information absorbable. This is where I started for learning the basics on particle physics and concepts of quantum mechanics.  The professors who teach these courses are carefully selected from major universities and are really top-notch, both as academics and as presenters.

I’ll keep you updated with the Lithium experiment as I progress.