Regular readers will recall that I’ve had a pretty difficult summer, being wracked with repeated “breakout” pain crises, too often reaching beyond Level 10 … morphine territory!

And my SCI readers will surely know that sudden severe pain for a paralyzed person can be set off by Autonomic Dysreflexia (“AD”) – the body’s confused response to an injury or an internal problem that often is not immediately obvious.

Even an ingrown toenail can kick off an AD crisis with spiking blood pressure and breakout pain.  The challenge, typically, is to figure out the source of the problem and do something about it as soon as possible.  An overfull bladder can be emptied; an ingrown toenail can be cut away, etc.

Well, this summer we knew there was something wrong with my right knee, and X-rays revealed the femur had been broken.  The hospital staff told us that the break was an “old” one, probably from a couple years ago they concluded.

While I couldn’t recall when this might have happened, that my right leg had been broken was clear enough.  And I thought that maybe the ligaments had been either stretched or torn in June when I first tried to stand and walk a few weeks after spinal cord surgery.

When the severe pain breakouts persisted week-after-week, indeed right through the summer, my Dad began to suspect something else might be going on.

But what?

So my mother flew back to the U.S. a few weeks ago and took along with her both X-ray and MRI images of my knee that has been made in July.  The idea was to retain the services of an experienced orthopedic surgeon in Miami for a second opinion and some advice on what to do next about the broken leg.

My Mom contacted an exceptionally experienced orthopedic surgeon specializing in sports medicine and asked him to take a careful look at these images.

Here’s the surgeon she visited:

http://www.herrerasportsmedicine.com/dr-mauricio-herrera-miami-institute.html

Dr. Herrera took a close look at both X-rays + MRI and concluded:

1. No ligaments had been stretched or torn.
2. A major bone in my knee had been “recently” broken … meaning specifically, he said, “within the past two to three months.”

His diagnosis:  “Non-displaced distal femur fracture”

Here’s a link to a paper that describes my injury:

Distal Femur Fractures

Dr. Herrera said that if I had been his patient at the time of the injury, my leg would have been secured immobile in a straight position for at least six weeks.

In the event, however, the injury was not correctly diagnosed when it occurred.

As a result, day-after-week my right knee was bent for me to sit in my wheelchair and repeated attempts to get me to stand and even “walk” were made by the rehab staff.

So you see, day-after-week I was grinding away on a broken leg!

😦

No wonder, then, I’ve had such seemingly inexplicable, severe pain … or that my knee remained swollen for over two months.

Well, today we just have to play the disappointing hand we’ve been dealt and get on with life.

Tomorrow I’m having another set of X-rays and MRI (soft tissue) images made that we’ll send over right away to Dr. Herrera to assess how things look right now and take advice on anything I should or should not be doing going forward.

As far as I can tell, the big femur must be healing itself, because I can now bear my own weight standing without the goose bumps, drenching sweats and fast-spiking neuropathic pain that I still had just a few weeks ago.

Anyway, I suppose I’ll get over it.  A lot of good complaining will do me!

Next up will be our attempt to execute Professor Wise Young’s ChinaSCI Lithium Protocol to see if this can drive a permanent reduction in neuropathic pain levels.

Here’s a link to clinical trial we’re trying to replicate:

China2011_Lithium_Trial

We have plenty of lithium carbonate on hand, but we have not yet identified a lab in Kunming that can measure blood serum lithium levels.  My Dad is presently working on that and just today got a very promising lead at the teaching hospital affiliated with the Kunming Medical School.

During the past month, SCI patient registration at Tongren Hospital has picked up, with an influx of Chinese patients ranging from paraplegics to high-level quadriplegics.  It has been really nice getting to know the new patients, and especially because their attitudes are just so positive.

Next week I’ll post some pictures of patients presently in the Tongren SCI rehab program, which is definitely gaining traction in China.

My knee is still swollen but is on the mend … seems to be healing and getting stronger again.  However, to prevent another setback, I decided not to walk over the last few weeks, instead settling for standing balance in 30-minute stretches.

Needless-to-say, I am disappointed not to be moving ahead as quickly as I had hoped with the walking protocol, but if I keep trying to walk too quickly I am never going to heal what I believe is a seriously stretched ligament.  So I’m presently wearing a full length leg brace whenever I stand, which prevents my knee from hyper-extending when I am standing. This really seems to help.

On the pain front, my Dad has returned from his “World Pain Tour” and we have just begun to discuss all of his findings. In my next blog I will update you further on various pain management solutions and what I plan to do next to see if we can solve this problem.

After speaking with numerous doctors and scientists, we are working on the premise that anterior (front side) arachnoid cyst pressure on my dorsal root ganglia was likely the original cause of the neuropathic pain. The cyst-lancing surgery on May 14^th was meant to have relieved this pain, but it failed to do so, evidently because the cyst had been left in place for too long, producing “pain memory” that is challenging to erase.

Of course, neurons can “change their mind” (refer recommended book “The Brain That Changes Itself”) and we are pursuing various strategies to this end.

My first attempt to re-program my mis-behaving neurons will be based on the Lithium carbonate protocol proposed by Dr. Wise Young (M.D., Ph.D.) and recently subjected to clinical trials in China.  Here’s a link to the trial paper on which I’m basing this decision.

Dr. Young has been at Rutgers University since 1997, where he serves as Professor and Chair of the Department of Cell Biology and Neuroscience.

Here is a more complete biography of Dr. Wise Young (http://keck.rutgers.edu/center/center.html).

For readers who may not be familiar, Dr. Young also founded and serves as moderator for the CareCure community forum … www.carecure.org … which provides extensive information on pretty much everything related to spinal cord injury.

Dr. Young was actually here in Kunming several days ago, as he works closely with Dr. Zhu Hui and the Kunming Walking Program. Wednesday afternoon he came over to visit at my apartment for a few hours, during which we discussed the ChinaSCI Lithium protocol in considerable detail.

This protocol is based on a published double-blind clinical trial in which half the subjects had placebo.  I have attached to two papers published on this trial:

1.) Spinal Cord 2011 Yang

2.) Spinal Cord 2011 Wong

Interestingly, the ChinaSCI clinical trial did not support the hypothesis that Lithium carbonate might promote motor function recovery, but patients with high levels of neuropathic pain found their pain levels were not only greatly reduced but also that the pain stayed reduced long after the trial ended.

So the Lithium carbonate was not acting as an analgesic (pain killer) in the ordinary sense of the term, because the good results continued without the drug.

Rather, it appears that Lithium changes the behavior of pain-related neurons, whether in the spinal cord or brain.  In other words, Lithium seems to reverse the earlier pain memory imprint and changes neuronal circuitry in the brain in such a way as to perhaps permanently reduce neuropathic pain.

We’ll see soon enough!

For scientifically minded readers of this blog, Dr. Young explained to me that lithium activates and inhibits multiple phosphokinases and inhibits several phosphatases, all of which converge to inhibit an enzyme called glycogen synthetase kinase 3-beta (GSK3b), which normally inhibits several major nuclear factors that stimulate neuronal growth and stem cell proliferation.

Several laboratories have reported that Lithium stimulates regeneration in the spinal cord and also causes neural stem cells in the brain to produce more neurons.

Lithium is also known to increase the volume of gray matter (the part of the brain containing neuronal cell bodies, as opposed to white matter which contains mainly myelinated axon tracts) by as much as 15% after only 6-12 weeks of oral lithium.

Just imagine:  Ali with 15% more gray matter! 🙂

I should know in about two weeks if Lithium has any effect on my neuropathic pain, but I intend to follow the protocol precisely, which requires maintaining specific Lithium blood serum levels over the course of six weeks.

Here is a random Funny Fact for you on Lithium:

The popular soft drink “7 Up” had a Lithium-based formulation early in the 20th Century, back in the good old days when Coca-Cola was formulated with real cocaine!

I will go into the details of our plans B, C and D in subsequent blog posts in case the  Lithium proves less successful than I am hoping .

Meanwhile, the data on use of Lithium carbonate for reduction of severe neuropathic pain is obviously promising.

The next challenge we are presently battling is this chronic post-surgical neck pain I have developed.  Directly on my scar and several inches in either direction around my scar, I have developed what feels like a radiating pain up and down my neck in combination with severe knots.  It is now been almost 4 months since my surgery, and we have determined that this persistent, acute neck pain not normal.

I do not yet have a hypothesis for the cause of this intense pain, but as a first step I’m going to have a new MRI of my cervical spine made next week. I’ll keep you updated on whatever we discover.