[Nicole]
Bernard is back home from the hospital, temporarily, while we wait for a bed to become available at the larger regional hospital located seven hours from here. While we wait, I’ve been meeting weekly with the doctor to go over test results, discuss and make alterations to Bernard’s pain management, and deal with our concerns with what we are heading into. The plan is to see a neurosurgeon and a physical medicine specialist. In order to make the upcoming trip as profitable as possible, we have also written a letter to Bernard’s doctor in the hope that he’ll help us encourage the people we are going to meet to approach this problem in an open, scientific spirit.
The cause of the intense nerve pain has not yet been diagnosed, though numerous tests have been performed. As well, Bernard has clearly observed in recent years that the inflammation, nerve pain, and numbness always stem from motion at the site of injury in the lumbar back. The obvious conclusion is that excessive motion is to be avoided until a proper diagnosis is made and a treatment decided upon that reflects the actual evidence. Instead, we’ve had physiotherapists aggressively pushing motion therapy onto Bernard, despite his clearly voicing his concerns over safety. Obviously this is problematic and is one of the things we needed to address with the doctor before heading to the new hospital.
Here is the letter sent to Bernard’s doctor:
Dear Dr. M________, February 16, 2009
Thank you for all your efforts in arranging the necessary consultations, travel, and hospital stays. We could not have gotten this far without you, and we appreciate very much that you have taken the situation seriously.
We have a few strong concerns relating to my upcoming trip to Kelowna [hospital], and we are hoping you can assist us. It is probably best if I simply list these for you:
1). The trip itself:
There is not much left of my L4-L5 disc, and the substantial wear and tear of bouncing around in the back of an ambulance is too much for me at this point. Shortly after both my first Trail trip and my return home, I had small but significant downturns in my lower back’s condition. The less disc height remaining, the more effect each small reduction has on nerve pain and general function. Even a small further downturn might well mean that among other things, I could not get up to go to the washroom anymore, even once a day. I think we need to firmly tell the ambulance service that I must go by air ambulance. Seven hours (each way) in a ground ambulance is well beyond what I can safely bear.
2). Physiotherapy and related ideas:
It is illogical and dangerous, in the case of an injury at the spine that is causing substantial nerve pain in the legs and feet and numbness in all the toes, and yet remains undiagnosed, to even consider physiotherapy of any kind. And yet, from recent experience, it is obvious to me that this is what the system will attempt to do if it cannot find any other immediate avenue. I simply do not want to have physio of any kind at this point. If I am thoughtlessly pressured in this direction yet again, I will have no choice but to refuse in the interest of basic self-preservation. Quite simply, motion is harmful for me at this stage, and it is imperative that this be communicated to the various specialists we will be dealing with.
The lack of interest in my own observations within the system is frankly bizarre. I am a trained biologist and I am offering nineteen years of detailed observation and experience from the perspective of someone who actually has a back injury. And yet, most medical personnel seem to feel that their decades-old textbook knowledge is so perfect and complete that there could be no possible benefit to their even listening. I know my own body well. So, when someone tells me that his or her superficial 30-second ‘observation’ of one point in time trumps my 19 years of careful, detailed observation and knowledge, I find this simply ludicrous, a fantasy of the system that is very dangerous to me.
3). Instability and motion:
It is obvious to me that there is instability or excessive motion of some kind at the L4-L5 level of the spine, the same level at which the nerve symptoms originate. The problem began with motion, worsens with motion, and all nerve symptoms point to interference of some kind at that level.
The fact that static scans show no direct pressure on the nerve roots is interesting, but in the end essentially meaningless. All it shows is that diagnostic techniques and models so far are insufficient to the task. Unfortunately, it is being taken instead, in some quarters, as proof of something. But the absence of data cannot prove anything. If the present system doesn’t have the techniques and technology available to properly diagnose this problem, let it simply be honest and admit that. Then we can discuss where they might be available.
Please consider the following:
a) The injury took place through extreme twisting and bending motion under heavy load.
b) All episodes, major to minor, over the years have come with sudden or improper motion.
c) All pain, inflammation and numbness on a daily basis stems from and increases with motion at the injured level of the spine.
d) The last few major episodes involved a small but clear sensation of slippage at the L4-L5 level in the first fraction of a second.
e) During those major episodes, I perceived an increase in spondylolisthesis at L4-L5 clearly detectable to the touch.
f) At times during those major episodes, I could clearly feel a sensation of bones grinding at the L4-L5 level.
g) The MRI report of three years ago indicated some damage to the ligamentum flavum at L4-L5. (I believe there are clear signs of deeper ligament damage as well.)
h) There is a massive reduction in disc height at L4-L5. How could this not contribute to excess motion of some kind?
i) I can feel motion at that level.
It is an absolute necessity to avoid a repeat of past mistakes at this late date. I feel very strongly that my own observations have been entirely neglected in favour of a standard, one-size-fits-all diagnostic model that fails even to distinguish between a baseline state and acute episodes, or between early and late stages of an injury. And it certainly has failed completely so far to properly diagnose or treat what is clearly a non-standard case. So far the system has been trying to shove a square peg into a round hole, simply dismissing all evidence that doesn’t fit the model.
Would you please add an additional note to the surgeon detailing some of these points? I know it is somewhat unusual to request this, but it would make an immense difference to me and to Nicole at this crucial point. So far, going in cold has been a complete disaster, meaning essentially starting from scratch each time. It is important to note here that the files do not at all reflect the reality of the situation, but rather exclude all evidence that does not result from office visits or fit the standard oversimplified model.
Thank You Very Much for All of Your Efforts on Our Behalf,
(our signatures)
