About my upcoming surgery — finally scheduled for May 14th — well, I’m thinking about a two-part narrative on this subject so that these posts don’t get too long.
Today I’ll lay out the background, and tomorrow I’ll spell out details of what is shaping up to be a pretty complex surgery in which my neck will be effectively broken again in order to correct what’s wrong. How about that! 🙂
For many months I have endured severe neuropathic pain that has been getting steadily worse. Actually, the pattern became apparent in Miami about a year ago.
The core pain is with me 24/7 … sometimes as low as Level 6 in the mornings on a really “good” day and then getting steadily worse throughout the afternoon. In the evening the pain often reaches beyond Level 10, with the sensation of knives being stuck in my neck and shoulders, and when it gets this bad I am unable to sleep at all. (I’ve long ago gotten the hang of why sleep deprivation is considered such an effective form of torture!)
Anyway, the escalating pain levels have now reached the point where I am unable to participate fully in the Kunming Walking Programme, which is the main reason I came here in the first place. Recently I have only been able to last until midday before having to retreat to my apartment. As the old saying goes … “something has to give.”
The view of my top medical team here (Dr. Liu Yansheng and Dr. Zhu Hui) is that my pain is caused by a combination of a so-called “tethered” spinal cord + a fluid-filled cyst growing on the anterior (front) side of my spinal cord. The feeling is that the cyst, which runs from C-5 down to my C-7 vertebra and now occupies more than 50% of my spinal cavity, is likely the major cause of my pain. Further, sequential MRIs reveal that the cyst is growing, and this may account for why the pain keeps getting worse and lasting for more hours each day. For example, between December 5, 2012 and April 13, 2013 (about 18 weeks) this cyst grew from 2.7 cm to 3.6 cm, an increase of more than 30%.
Day and night this cyst not only presses hard against my spinal cord, causing neuropathic pain, but there is also MRI evidence that the incessant internal pressure is causing further degeneration of surviving tissue inside my spinal cord.
The surgery being proposed turns out to be seriously tricky because the cyst is on the anterior (front) side of my spinal cord, whereas surgical access is only possible from the back side – so-called dorsal entry. This means that between the point of surgical entry and lancing this cyst there are not only three intact vertebrae that have to be cut away but also the actual spinal cord itself is in the way. Some obstacle course!
We have learned that few neurosurgeons anywhere in the world have experience with a procedure this complex — some would say even “daring” – and even fewer apparently would be willing to attempt it.
Fortunately, members of my 5-man team (actually one superwoman, Dr. Zhu Hui) are all Kunming PLA Hospital veterans who have performed this kind of surgery hundreds of times and exude confidence they’ll pull me through this just fine.
Tomorrow I’ll go through details of the surgery that has been proposed as well as how the recovery is expected to play out … and also how resumption of vigorous rehabilitation just 15 days after surgery is anticipated to play a significant role in my recovery.
Fortunately, there is a wonderful Chinese patient, Nu Jia, from Guangzhou who is here alongside me in the program, and she went through pretty much the same surgery for the same reasons in February 2012. Nu Jia’s car wreck injury (C5/6 ASIA A Complete) appears to have been even worse than my own, suffering a near-complete transection of her spinal cord. But today she is pain-free and making great progress, not only with walking but has also recently regained bladder control.
So there’s a lot to play for once I get over this hurdle!