I apologize I have not updated my blog in the last week. This past week has been a challenging one.  I would also like recognize that I promised my next blog to contain pictures and a detailed description of my surgery. I am presently working on the surgical photographs because I want them to be as detailed as possible for you. So, I promise my next blog post will be very graphic.

As my regular readers will know I injured my right knee about three weeks ago now when I attempted to use the walker for the first time.  Since then I have stayed off my leg until this week as I thought I would at least give standing a try.  I attempted to stand for 30 minute intervals on Tuesday and then twice on Wednesday. Unfortunately, even weight-bearing through standing resulted in a highly dysreflexic response.

For those readers that do not have spinal cord injuries, autonomic dysreflexia is a potentially life-threatening condition that most often occurs in spinal cord injury patients. Autonomic dysreflexia is a reaction of the autonomic nervous system to overstimulation and is characterized by episodic high blood pressure associated with a whole host of symptoms. Some of these symptoms include flush skin, headaches, increased neuropathic pain, and sweating above the level of injury to name a few. Most SCI patients experience dysreflexic episodes differently, but usually have at least one of the following above symptoms. Autonomic dysreflexia is believed to be triggered by afferent stimuli (nerve signals that send messages back to the spinal cord and brain) which originate below the level of the spinal cord lesion.

Neurologically, it is very interesting what is happening to me at the moment.  My right knee is still quite swollen and I have discovered my knee is injured towards the outside of my leg. We came to this conclusion because when we put pressure on a specific spot on my knee my body goes into an involuntary muscle spasm, my neuropathic pain congregates to a specific area on my knee, I get goose bumps all over my body and I start perspiring on one half my face. Most of these reactions are my particular response to autonomic dysreflexia when my body is in pain. What is most interesting is that I could keep touching the same spot on the knee and continue to spasm each and every time I touched that particular spot. This response indicates to me that there may be some sort of neurological response going on.

After my surgery my surgeons told me that my spinal cord was now beating to the pulse of my heart as it was literally stuck in place before due to the multiple cysts in my spine.  With that said, it has only been about six weeks since my spinal surgery, so who knows what is waking up in my body. Only time and hard work will tell.

Needless-to-say it is been a very challenging week with respect to my pain levels, which have been off the charts 😦  Unfortunately, after two days of standing my knee is once again swollen and I am down for the count. I have an MRI scheduled on Monday morning to see if I have done more damage than I’m aware of.

In the meantime, I continue upper body workouts. I am working on strengthening my neck and back muscles, which are getting better, but still pretty sore from the surgery.

As regular readers know, I have been having a lot of severe pain issues since injuring my knee two weeks ago.  This problem continues but seems to be getting gradually better.

Funny, really, to reflect that I’ve just come through very complex, inherently dangerous neurosurgery in fine shape … but in just a few weeks have sustained back-to-back injuries in low tech rehab.  Go figure!  I’ll have to be more careful. 🙂

On the lighter side of rehabilitation, since my knee is still recovering and I am unable to presently stand or walk, I have been concentrating on upper body Occupational Therapy (OT).

Most of the OT in the morning involves building up the strength in the back of my neck “rowing” on the Vita-Glide … then a long routine with wrist weights … balancing exercises, etc.  For the most part this is still pretty hard work as I’m trying to recondition my upper body from having been recovering in bed for the past month.

Otherwise, in the brand-new 2^nd floor rehabilitation center the staff have just put together a new tournament table to challenge using fine motor skills with your hands.  This may not be exactly the most appropriate table for me, since I do not have any particular motor function in my hands, but it does allow me to work on my adaptive hand behavior.

Anyway, today my pal Nu Jia and I had a little downtime, and we so decided have a competition at the OT table.  It was a fair match, as Nu Jia has exactly the same level of injury as myself … C6 … so her hands and triceps are just as impaired as my own.

We chose a game with a long thick string connected to a small wooden needlepoint. The point of the game is to thread differently shaped blocks onto the string.  Now try to imagine a quad picking up a needle, even a thick wooden needle, and with it trying to weave a necklace … or maybe think of trying to push wet string.

Nu Jia and I squared off to see who could get 10 wooden objects threaded through the needle in shortest time. The entire rehabilitation team gathered around and started to cheer us on. Both of our hands were literally shaking as we strained to get these darn little wooden objects onto the needle.  The competition was fierce, but I’m afraid that in the end Nu Jia won fair and square … actually, she won by a landslide. I might like to say that’s because she’s been practicing and I’ve never done this before, but truth is she’s just really good 🙂

“To the victor the spoils” …  Nu Jia’s winning necklace!

 

Nu Jia Hard at “work” …

 

Ever see a prettier carpenter?

 

We’ve decided now to have a weekly competition, and the staff just posted a scorecard up on the bulletin board, so this is getting serious. I think friendly competitions like this are a good idea, as it will help keep the atmosphere here both fun and intense at the same time.

All in all a pretty good day despite the fact that my knee is still swollen, which results in Dysreflexia that, in turn, triggers severe neuropathic pain, usually in the evenings just in time to wreck a night’s sleep.  I probably have another few days of this before I can actually re-join the walking program again.

Finally, I would just like to prepare my regular readers for an upcoming blog post as it will not be for the faint of heart … I will be posting high resolution photographs of my spinal surgery.  These photographs are exceptionally informative but are necessarily quite graphic.

I am still recuperating here at my apartment in Kunming.  My injured knee seems to be a little better each day, but in the evenings the neuropathic pain is still a lot to contend with.  Unfortunately, my brother Colin just told me that my knee may take more than a month to really heal properly.

Anyway, today I  just remembered that last week I promised to post photos of the new rooms now ready for international SCI patients coming to the Tongren Hospital.

The idea behind these new rooms is as follows.

International SCI patients can choose to live “off campus” in an attractive new apartment complex located across the street and within easy (10 minute) wheelchair commute from the hospital.  This is how I am set up.

The alternative is to live right inside the hospital, which is what some other program participants do.  Presently, living in the hospital means taking a very nice twin-bedded private room on the 7th floor, which offers 24-hour nursing care and is run pretty much like a modern private hospital ward elsewhere  in the world.

Now that rehab operations have been relocated to the spacious new 2nd floor centre, the next development phase is to offer international SCI patients residential accommodation on a turn-key (everything included) basis on the recently-renovated top floor of the hospital overlooking the Himalayan foothills.

The concept is to offer international SCI patients an opportunty to get right to work on rehab and save the time and expense of setting up a private residence in China.  In my case, my sister Tiffany was our “advance man” and came over here in early January to secure an apartment and get it fitted out for me.  With some assistance from long-term expats living here, getting an apartment up and running is not too hard, but not being rushed at the beginning is definitely an advantage and will both reduce cost as well as get a better end result.

So Tongren’s new offer to international SCI program participants is to live inside the hospital on a month-to-month basis in a residence-like environment on the top floor.  And then if an individual wishes later to rent a private apartment across the street, this can be arranged without rush or waste.

The 8th floor of the hospital has therefore been designed with this idea in mind and should appeal to individuals who wish to come here on their own and get right into the rehab program without having to set up their own household right away.

There are 14 large rooms or suites on the 8th floor, each with ensuite bathroom with wheelchair accessible shower.  Of these, 11 are so-called “Standard VIP” rooms + one is an over-sized  “Studio” room + there are two large “Suites” that comprise separate bedroom and living room.

These rooms were originally intended for VIP Chinese patients, so they’re very nice … hospital beds hidden inside wooden frames, green leather upholstery, wall-mounted flat screen TVs in every room, maid service, etc.

Here are some photos.

My sister Tiffany + Dr. Zhu at 8th floor entrance

Wide, sunny corridors on top floor

“Standard VIP” room (maid service included)

Spacious “Studio” with desk + work area

“Studio” viewed from living area corner

Sister Tiffany in the “Suite” living room

Also located on the new 8th floor is a kitchen where residents can choose to prepare their own meals if they don’t like the hospital cafeteria food, and there is also a general purpose recreational room for movies, reading, games and general social activities.

24-hour nursing care and a full range of hospital medical resources are obviously also available, as required.

Sorry to have been off-line for a few days, as I injured myself Friday and had to spend all weekend in bed recovering.

😦

Here’s what happened.

Last week was my first since surgery back on the job at rehab, which started off on Tuesday with standing balance practice.  On Tuesday I managed to stand for a full 2 minutes in one go without passing out, and by Friday I managed to stand for 20 minutes in one go.  Each day I’d been getting up and down more than half a dozen times, which is really exhausting in this early phase.

So … on Friday Dr. Zhu interpreted my improved standing performance as my being ready to attempt the walking protocol, which required no less than 4 therapists to assist me —  2 to hold up my upper body and 2 to handle my legs, as I am paralyszed from the chest down.

Ready to go …

On my way … first walk

Wow … harder than it looks!

Here’s a link to a video my sister Tiffany made of my Friday performance …

http://www.youtube.com/watch?v=LvxxVDzaBvk&feature=youtube_gdata

Unfortunately, on one step a therapist working from behind pushed my right leg forward, but the rubber toe of my sports shoe stuck on the floor (at least as near as I can work out) and as a result my right leg buckled inward, seriously twisting my knee and ankle.  Remember, I’m bearing 100% of my own weight.

My initial response was quite peculiar.  For the past 2 years since injury, I have not perspired either above or below my C-6 level injury.  As some readers will know, it is unusal for a SCI survivor not to be able to perspire at least above the level of injury.

In the instant I twisted my knee, however, I immediately started perspiring on my nose and forehead in addition to having goosebumps all over, which is my body’s ususal reponse to a Dysreflexia episode.

This all happened so quickly that I was unaware initially that I had injured my leg.  Only when I returned to my apartment that afternoon did I realise that I could feel something was seriously wrong due to an explosion of neuropthic pain and also that I could no longer sit up in my wheelchair without passing out.

How’s that for another odd response?  Dysreflexia ususally drives blood pressure higher, very much higher, but here I was passing out from low blood pressure for the first time in over 2 years.

The weekend was living hell, as my ankle and leg swoll up and my blood pressure oscillated crazily.  I passed out dozens of times on Saturday, and severity of the neuroapthic pain defied description.

Dr. Zhu and my neurosurgeon, Dr. Liu, both came to the house to visit me on Saturday, and Dr. Zhu explained that twisted knees and ankles are not uncommon in the beginning due to the fact that knees and ankles unused for years are weak.  The core message seemed to be that a few days of bed rest would enable me to try again … Tough love!

Dr. Liu + Dr. Zhu visit me + even bring a heat lamp!

My particular challenge is that my baseline neuropathic pain has not subsided since before surgery, or at least it seems that way, but I’m really not sure yet because inflammatory pain from surgery has not yet completely abated.  Anyway, given my still-high baseline meuropathic pain level, the twisted knee and ankle sent pain through the roof.  Combined with the unstable blood pressure, I’ve been unable to focus on anything, let alone a computer screen, nor have I been able to sleep without resorting to benzodiazapine drugs … uggh!

In short, since Friday afternoon I’ve been a mess!

Presently here in China we’re in the middle of a 3-day national holiday, so I’m off-duty recuperating.

Meanwhile, my sister Tiffany was here visiting for the week and has been a HUGE help to me.  She came all the way from her home in Raleigh, North Carolina via Los Angeles and Hong Kong.

Really happy for Tiffany’s visit

Sadly she had to leave yesterday, as she is running a yoga retreat this summer.

Party time!

Wow!  Talk about surprise parties!

Regular readers will recall my Tuesday post in which I included photos taken during Nu Jia’s and my tour of the brand new, almost-finished 2nd floor rehab center .  During the tour, we were told the new facility would be open by the end of the month, and indeed workmen were still busy all around us.

Well, this is China!  Things can happen here really fast when there’s firm leadership, and today’s events sure proved the point.  For this morning we were asked by our commander-in-chief, Dr. Zhu Hui,  to report for duty on the 2nd floor, where we not only discovered our new rehab center broom-clean but also that tables were being set up for a lunchtime party.

🙂

Welcoming toast by Dr. Zhu

First cut by Nu Jia, Dr. Zhu and myself.

Solo cut by Kelvin (who’s here from Canada)

Not having it … David prefers pizza!

Off-duty nurses having a ball …

Of course, it wasn’t all play today … we come here to work, too!  This is Day 23 since my surgery, and I am feeling more confident as I am able to hold better posture and learn to balance while bearing 100% of my own weight. Even Joseph Pilates might have admired my “core” progress!

Square those shoulders!

And finally, here are some more photos of our cleverly designed new center.  It’s sort of challenging to describe, as it is built on the 2nd floor around a ground level atrium and covered with a huge skylight dome.  Modern China is full of brilliant architecture, such as the brand new Kunming International Airport.  So I feel we’re pretty lucky to be able to make good use of such an open and cheerful space.

Brand new everything + so MUCH space!

One day Nu Jia and I hope to use those steps

Here’s OT corner …

Lots of light = lots of happy indoor plants!

Looking ahead, in my next post I’ll publish some photos of the brand new 8th floor rooms that are now available for international patients who prefer to live on the hospital grounds rather than rent an apartment across the street as I did.  Both work fine, but the new rooms are REALLY nice and offer newcomers a turn-key solution.  Just get to the Kunming International Airport from Hong Kong, Shanghai, Guangzhou or Beijing (or even direct from Seoul, Korea, as I did in March) and a wheelchair-accessible London Taxi can bring you straight to the Tongren Hospital.

Today (Tuesday in China) is the 21st day since my spinal cord surgery, and I reported back for rehab duty to Kunming SCI program director, Dr. Zhu Hui.

Regular readers will recall that last Wednesday I made a pre-mature attempt to rejoin rehab and that the effort was too much for me, being just 2 weeks out of the operating room.  So I went to bed Wednesday evening and didn’t get back into my chair until this morning.

This was my Dad’s idea of house arrest … that is, to give me five full days of old-fashioned bed rest at home to heal.  This seems to have worked out as he and I hoped it would, because today’s relaunch went very well.

8:30 musical warm-up with sister Tiffany + Team Kunming

Okay … here we go …

 Up, up … and …

Way up I go …

 Dizzying solo flight!

Turns out “21” may be the magic number here in Kunming for recovery from major spinal cord surgery, as my good friend Nu Jia was operated on Feb 16th last year (2012) and started rehab exactly 21 days later.  She has made amazing progress since then, even regaining bladder control, which is all the more remarkable considering her auto-accident injury nearly severed her cord and her 2012 surgery with Dr. Liu here in Kunming came fully a year after her original spinal fusion in Hainan Island.

Nu Jia … Dr. Zhu Hui … and Newbie Ali

Here’s the background on why Dr. Zhu pushes so hard to get new surgery patients standing, bearing 100% of their body weight, as soon as possible.

The soles of our feet are particularly dense with sensory nerves that feed back through the spinal cord to the brain.  This distal signaling thus completes a lengthy feedback circuit, and the sooner patients apply full pressure to their feet the better and faster they seem to recover.  Dr. Zhu is always encouraging her SCI patients to push the envelope … to push themselves as hard and as far as possible.

I doubt the renowned U.S. Marine Corps boot camp has a tougher regimen than the one career Chinese army officer Dr. Zhu advocates.  We come here to work … to work as hard as possible, and so today I returned to Dr. Zhu’s boot camp!

Altogether I managed to stand 4 times this morning for a total of 30 minutes standing time, and I managed another 30 minutes in the afternon on 6 attempts.  In between attempts I passed out a couple of times, so I gave it my best effort.

Out for the count … 🙂

Over lunch break, Nu Jia and I were offered a tour of the terrific new SCI rehab facility nearing completion on the 2nd floor.  Wow!

What a brilliant design … very open and bright with huge skylights and 2 walking tracks, one outside!

Grand tour begins ... 🙂

Indoor rehab track with skylight dome …

Even OT challenges are to be covered …

Outdoor rehab track under construction

The new rehab center will be open by the end of this month and enable more international patients to participate as well as to live comfortably right in the hospital in brand new deluxe rooms on the 8th (top) floor.

In a subsequent post I’ll publish photos of the new 8th floor rooms as well as more photos of the new 2nd floor SCI rehab facility.  No less than 7 elevators connect the 8th floor to the 2nd floor. I’ve never seen anything like this new rehab facility in the U.S.  Of course, over here costs are considerably lower, and insurance companies have no say at all in how SCI patients are treated!

At Dr. Zhu’s request, the Kunming SCI program will from now on be called the “Kunming International SCI Centre” … KISCIC for short … and will welcome patients from all over the world.

KISCIC will offer both innovative SCI surgery from a surgical team led by the renowned Dr. Liu Yansheng as well as what I think is presently the world’s most effective SCI rehab protocol led by the the incomparably experienced Dr. Zhu Hui.