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.

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.

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.

An illustration of the complex pathways of Spinal Nerves

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.

 

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.

 

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 …

🙂

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.

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

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

The surgical team getting ready for surgery

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.

Before the dura mater is opened … this is the scene

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

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.

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.