CRPS My Journey: Chapter 29 - You may delay, but time will not. — Benjamin Franklin

“Time is what we want most but what we use worst.” — William Penn

It has been a while since my last post and I thought that I would have more time to sit down with the next chapter, but alas. Strange how time passes by so quickly. How often do we say, "Don't worry, we've got time", just to wake up one morning to suddenly realize that time has run out? Procrastination - the act of putting things off till the last minute. We all do it. "I will start losing weight, starting next week". "I will start with the project on Wednesday". "I will spend more time with my family when I get home". Do any of these sound familiar?

Dawson Trotman once said, "The greatest amount of wasted time is the time not getting started." We often have good intentions and we spend a lot of time planning (which is not a bad thing per se), but often this become so time consuming that we fail to start. And when we eventually do start, we find that time either is running out, or has already run out.

Lately I have tried to focus on finishing tasks that I have set aside due to pain or time restraints, finances or just pure procrastination. Whatever the reason(s) were, regardless of the validity of the reason, I often found myself at the tail end of time. And with my health this was no exception.

It has been almost four years now since I started seeing Dr King at the Spine Centre. Initially the plan was to monitor the degeneration of my vertebrae over a three-year period. Last year as we reached the third year of this three-year period. We agreed that, with my condition seemingly not progressing as rapidly as we feared might happen, that we had beaten the odds. This would mean no operation, which was awesome news, as this was exactly what we tried to prevent as far as possible, partly because of all the risks that came with an operation such as this, but also (perhaps even the greater reason behind this) because we wanted to avoid the possibility of the CRPS spreading to my neck.

Well I saw Dr King earlier this year for a follow-up, and he insisted that we do a MRI, just to make sure that we do not miss anything, as the last MRI was four years ago. He still did not want to operate, and told me that the only way that he would decide to operate, is when my spinal cord and my spinal fluid is being compromised.

A couple of weeks ago Teresa and I both went to see him for the results, and things did not look good. He sat us down and started asking if I had any symptoms, apart from the normal pain, to which I replied no. He explained that sometimes MRI's can be over sensitive, but looking at mine, and zooming in on the problematic vertebrae, he was a bit perplexed. He showed us where c4/5 is pinching the spinal cord creating a barrier whereby little fluid is allowed to pass by. This meant a compromised spinal cord - which we feared.

He asked me to stand up, walk from one side of the room and back, do the heel to toe test, turn around quickly among some of the tests. He had me press up and down with my hands, lie on the bed and do more reflex tests. And this is what baffled him, as according to my scan I should have symptoms like struggling with buttons, falling over, being off balance. In fact, I should have been in a wheelchair. Yet I passed all the physical tests. Yes, Chucky drops stuff from time to time, but that is to be expected. But for all the other tests, I seemed to be healthy.

So I asked, "Doc, is this good news or bad news?", to which he replied. "This is good news, weird and mind boggling, but actually great news. This means that the symptoms can be prevented". And then he explained it like this:

"First of all, I am still hesitant to operate, as we know that the possibility is there that the CRPS can spread to your neck, which we want to prevent at all cost. In more than 700 of these ops that I have done, I never had a patient present with CRPS in this area, BUT unfortunately it is documented, so the risk is still there. Especially in your case with the degree to which you developed CRPS.

However, unfortunately we have gone past the stage now of waiting and looking at an operation as a possibility, to looking at an operation as a necessity. Because of the deteriorating state of the spine, and while you do not present with symptoms, we have to operate to prevent you from getting those symptoms. Should we leave this for say next year, and you develop any of these symptoms, we will still be able to repair the spine, but we won't be able to reverse the symptoms. So if you were to land in a wheelchair, you would then stay in a wheelchair, even though a fusion was done. Therefor we need to act now.

Luckily it looks like we only need to do C4/5 for now, as (although the others do not look great) there is still enough space around the other vertebrae. Also by doing only one fusion, we will hopefully minimise the risk of CRPS flare-up or spread. Obviously with the operation there are other risks like losing arm and/or bodily functions, losing your voice or becoming raspy (usually temporary), secondary infections even bleeding out (worst case scenario should something go wrong), but we will try to minimize all of these as much as possible. Any operation has its risks.

This is a routine operation. We cut on the front of the neck, next to the vocal cords and next to the spine. We take out the cushion between C4/5 and replace it with a spacer, before we fuse the two vertebrae with a metal plate. It will take about a year for the bone to fuse, but you should lose very little movement, and the healing process should be fairly "quick "(in relation to other ops). You will go in the Friday morning, we keep you sedated in ICU for the rest of the day, the next day the physio will visit you. If she is happy that there are no side effects, you will be moved to a general room. I will come by on Sunday, and if you feel okay you will be discharged. A week or two at home and you should be able to return to work. After that I will see you on ten weeks, then three months, six months and then again one year to make sure that there are no complications and that the healing process is going as it should."

Somehow, I thought, hoped that we would still have time. The one thing that probably helped to postpone it this far and that helped to keep the symptoms at bay, apart from the Lord's grace, was my battle with CRPS. Fighting to manage Chucky probably occupied my brain so much that my brain did not notice what was happening with my spine. Well this is not a medical fact, so don't quote me on that. However, I would like to believe that this was the case, as it would somehow give purpose to this horrendous disease called CRPS, aka Suicide Disease - even if it was just to explain in my own mind what I was dealing with.

My op is scheduled for Friday 2 August 2024. How do I feel about it? Everybody asks me that, and I know what people would expect me to answer, but I don't know. Perhaps indifferent or detached? Perhaps it hasn't sunk in yet, or perhaps I have already dealt with this as I had prepared myself over the last three years for the inevitable. Either way, this is something that I cannot shy away from any more. Time, which we thought was on our side, finally started to catch up to me. And so many of the things that I have wanted to do, that I have planned to do, is still unfinished. Do I have regrets? Of course I do. The problem however with regret (and I have said this before), is that regret always comes too late. It does not necessarily mean that you won't have time to fix things, but you will never be able to get back the time and opportunities you have wasted.

Life is short and every moment counts. Don't let a moment pass you by to let someone know that you love them, that you care for them. Don't waste so much time on not getting started. There's a famous quote by Ray Bradbury: “Sometimes you've got to jump off a cliff and build your wings on the way down.” Take chances and never take anything for granted.

In the immortal words of Mark Twain:

"Life is short, break the rules. Forgive quickly, kiss slowly. Love truly. Laugh uncontrollably and never regret anything that makes you smile."

Catch you on the flip side!