I forget that many folks don’t know my history, or back story, if you will, and am often asked about my disability and what CES is. These questions, and my not being able to recall if/when/where I answered them, has made me realize I should make a “permanent” post giving some if not all of the answers and history behind how I got to and where I am today.
I was diagnosed with Cauda Equina Syndrome (CES) in August 1999, at the age of 29. (In the past I had posted an extensive blog on living with CES but stopped when I felt it was no longer a therapeutic thing, but was actually hindering me getting on with life. Though I don’t recall doing so, I must have deleted the entire blog because I can’t find it now. I wish I hadn’t done that in retrospect, if that is indeed what happened, but what’s done is done and, I suppose, that information is now long-lost.) At the time I was only the fourth case of CES my neurosurgeon had worked on – in his then-30 year career – so it’s no surprise when someone isn’t familiar with it. Actually it’s a surprise if they have heard of it, even doctors! It was Divine intervention that I saw my doctor as it worked out, no other answer could suffice. In my case my disk exploded – they normally kind of leak or fizzle like a balloon when they rupture – leaving little pieces of “shrapnel” stuck all in the bundle of nerves at the base of my spine known as the “cauda equina”, because it resembles a horses tail. It took about two days from when it happened, they did tests and whatnot, before a male nurse finally got them to call in the surgeon who was on-call to check me; that doctor happened to be the best neurosurgeon this side of the Mississippi, the guy they call if the President needs a neurosurgeon ( and I’m neither kidding nor exaggerating). Within 20 minutes he had me undergoing an “old school” test where they inject some special dye and watch it move through the spinal nerves on some kind of monitor (I was in too much pain to remember more). Less than three hours later I was undergoing emergency surgery; it would’ve been sooner but they gave me dinner and he had to wait so long to out me under (and did he chew out the nurse that let that happen! LOL).
I’ll never forget him explaining it all to me; he told me what was wrong and that I needed surgery immediately. I asked what the options were if I chose no surgery and he replied “We will fit you for a wheelchair, permanently. But with surgery you have a good chance of recovery – maybe 30 or 35% possibility you’ll be able to walk.”; that didn’t sound like “good” anything to me!
A few weeks post-op, when they were transferring me from the hospital to the rehabilitation facility, I found out my “long-term goals” were to be able to use a walker to go 20-30 feet and be able to transfer from the wheelchair to the bed, toilet, etc. on my own; reality dropped on me like a ton go bricks at that moment: I’m going to be a paraplegic. Thankfully God had more in store for me than that. It took about nine months in the wheelchair to get to a walker on wheels, another year and a half or so to gate from the walker to two canes and braces on both legs and several more months to get to one cane and the braces. Barring Divine intervention again, this is as good as it’ll get, but a while lot better than it was ever supposed to be
Eventually I was able to go back to work, even though I was still disabled. It was a good period of time, but a short one – 18 months or so. I was involved in an accident, a hit-and-run, on May 5, 2004, that ended up causing me to have a second back surgery. It looked like a simple procedure that would take me a couple of months to recover from so I was actually eager to get it over with. After all was said and done my doctor had good and bad news for me. The good news was my previous surgery had healed very well internally, better than he had ever hoped for, and looked splendid. The bad news was that the disk below the new injury has sort if sprung a leak, leaking spinal fluid, and that hadn’t shown on the MRIs I’d had, it was inky by God’s grace that the doctor diligently checked both above and below the new injury and found this hidden problem. He fixed it, I joke he shot some Fix-A-Flat in there, but the extra damage was done and, it turns out, I never regained as much mobility as I had had before the second surgery. But still it’s a lot more now than it ever was “supposed” to be! I can drive, walk varying distances, depending on many factors, and generally live pretty well, much better than if I were confined to a wheelchair or even a walker still.
The arthritis and spinal stenosis cause me chronic pain, but I can live with it and manage pretty well. The neuropathy from the damage to my cauda equina is managed fairly well, too. But when it get out of hand it is a miserable nightmare – think of taking an ice pick, dipping it in a little acid, and then start randomly stabbing anyplace on the lower half of my body at random intervals, sometimes minutes between “stabs” and sometimes non-stop, that can last from hours to days and you have an idea of what an episode if these “break through” pains are like. And now that I’m a diabetic I can get a second form of neuropathy – diabetic neuropathy – so I’m really motivated to control this disease, you see.
I reckon that about covers it, most of it anyway. I may well add back to it and if I do I’ll make a note on the regular blog that an update has been made.
May God richly bless each of you,