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 14th 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:
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.
ali, so i am reading this and i am confused. The Yang report rocks re: pain decreasing but what is the point of the Wong report? 20 patients were supposed to undergo a 6 wk trial but they all quit due to AE’s within the first two weeks. but obviously the other 40 patients in the yang trial seemed okay and i assume completed the complete six weeks?
am I missing the point of the wong report?
This is exciting news!!!! let me know when you start.
Ali thank you again for all the wonderful information you share with us but when I try to go the me to the website? Please keep the faith as my aunt would say and keep believing – you will find the cure – i am confident of that:) love, caroline
Best wishes with the lithium trial!!!
This is really interesting. Thank-you for sharing your finds with us. I’m keeping everything crossed for you. xx
Very interesting, Ali. Lithium is also used to treat bipolar disorder. Your explanation for how it works coincides nicely with that. I learn so much from reading your diary. Best wishes……….
Nice to know you start to receive treatment for pain. Hopefully lithium works for you. Give my best regards to your Dad and Mom. Take care.
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