The McGill Neuro-Patient Resouce Centre has a number of relevant links for those with or interested in back pain, back surgery and related issues.  Most of the good information they give is actually from The University of Southern California Neurological Surgery site.  But there are other bits too, so I’ve linked to them both.  Unfortunately, most of the modern techniques they describe are not available yet in Canada.  If you find a place that does offer them in our country,  then drop us a line, eh?

(Thanks, Wendi, for sending us these links.)

Since it’s very difficult for Bernard to get to the doctor’s office, I go and talk with our physician on his behalf.  This works - for things like paperwork and prescription refills. 

Sometimes however, real physical tests must occur, so last week the local health nurse came to the house to do some blood work.  It’s great that they can do this, and I’m thankful that our local clinic helps us facilitate these things.  Unfortunately, the tests show that Bernard has some other health issues that need attention.  This will likely mean more medication and/or vitamins to take, something that’s been quite difficult lately because pain meds are so hard on the stomach.  But, at least we’re aware of the situation now and can try to remedy the problem. 

It must be very very difficult for disabled people to get the health care that we all require if they don’t have an advocate to help the process along.  Even with assistance from me, there are some things, like eye care for instance, that are being neglected with Bernard because we haven’t figured out the logistics.  The system is not set up to accomodate this type of disability.  And oh boy B really needs new glasses!

Bernard wore contacts for years, but that’s too difficult right now, so he’s wearing a rather tatty old pair of large, 80’s style specs that are so incrediably far out that they’re almost back in!  I’m sick of having to look through them to see my sweetie!!  

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Bernard claims that they’re good glasses.

 ”…they have so much lens to look out of, more lens bang for your buck!” 

I say they’re only good for a laugh.  Seriously though, the prescription badly needs updating, so a new pair would be a ‘two birds with one stone’ kind of deal.  I’m going to go to one of the local Optometrists and see if we can figure something out, though I don’t think there is an easy answer to this.

Anyways, I just think it’s hard for people who are hurt and alone to get the health care that they need.  Maybe you know someone needing a bit of help getting to where they need to go, or figuring out a different way to get the health care they require.

Below is a link to an interesting (and graphic) article about endoscopic surgery from the Bordeaux University Hospital and Rennes University Hospital in France. 

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Now we just need CANADIAN researchers to be developing these techniques and offering these surgeries. 

Here is a sample of the scans that were taken at the hospital in January.  Each one shows Bernard’s lower spine area.  The disc level that appears all squished together and at times with a whitish glow is the L4-L5, the real problem in our situation here, as far as we can surmise.

This is the x-ray.  It shows a loss of disc height and some vertebral body osteophytes (bony growths). 

Here is one of the CT (Computed Tomography) scan images.  It shows severe narrowing of the L4-L5 disc space.  The radiologist thought that the disc had been surgically removed - a discectomy - which is not the case.  There is still a little bit of a  disc bulge, but where has the rest of the disc material gone, and what impact does loose disc material have on surounding nerve tissue?

Here is one of the MRI (Magnetic Resonance Imaging) scans.  The disc that looks very narrow and has the white glow around it is L4-L5.  The report mentions some disc herniation on the inside of the left neural foramen but cannot make out any nerve root compression.  So, where does the intense nerve pain, and feeling of severe instability originate? 

For many years Bernard did the physiotherapist prescribed exercises which allowed him to live a pretty normal life.  But, now they, along with most other types of movement, make the pain and the sensation that he’s one tiny move away from a major acute incident, worse, not better. 

For more background and symtoms, please refer to:

 http://bernardsnewback.ca/wp-content/uploads/Letter_to_Specialist.pdf

Would someone please take a scientific approach, listening to all the evidence, and get to the bottom of this?

[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)

[Nkole]

Hopeful turn of events. 

Dr. M had Bernard brought by ambulance a week ago to the Kootenay Lake Hospital in Nelson, BC.  That’s about an hour from here, including a ferry ride.  He was moved from the house to the ambulance through the tremendous snow and up the hill on a gurrney - a bit of a challenge, but the two woman on the job were pros. 

He arrived safely at the hospital and was brought directly to his room, thanks to being pre-admitted by the doctor. 

A crazy winter storm began right after we arrived and I had to stay in Nelson that night because the roads were impossible.  I stayed at this great hostel on Baker Street called The Dancing Bear Inn.  It’s better, frankly, than most hotels.

So, the testing begins, again.

[Nkole:}

New Year’s Eve.  Bernard is not feeling too well tonight.  A terribly sore belly from all the meds he’s been having to take.  He’s sleeping…also a medication side effect. 

I, on the other hand, am very awake and quite tipsy. The cause is a delicious Italian Prosecco from Villa Teresa that I’ve been drinking, while watching the old movie ‘When Harry Met Sally” on the TV, and giggling at the kitten as she tries to catch the big green and purple balloons lying all over the floor. (from Bernard’s birthday party)  Bernard received a ‘BlueTooth’ keyboard and mouse for his b-day.  This means he won’t have to deal with so many cords when he’s using the computer while lying down, a minor but ever present hassle.  He was also given a little robotic insect, and a heater for germinating seeds. 

 Here are the little cakes, made in the spirit of Dutch gebakjes, that I baked for him. 

Poor little cakes!  Last night we put them onto the deck to stay cold. (The fridge is completely full of festive foods.)  A very large raccoon came onto the deck in the late evening and overturned the container holding the remaining treatlettes.  Not that we won’t eat them, because we will!

The doctor’s office called today, to let us know that Dr. M will phone as soon as a bed opens up at the Nelson hospital.  Then Bernard will be taken by ambulance to have new testing done and hopefully, hopefully, hopefully will be treated well and receive an accurate diagnosis. 

We’ve had such poor experiences with specialists!!  It’ll take many other posts to get into that.  At least this new doctor, and the health nurse, are getting things going again. 

The problem is that no one here in British Columbia performs the modern (meaning lumbar disc replacement and/or endoscopic) back surgeries.  Or if they do, we’ve been unable to locate them.  Few surgeons in Canada are trained in the new techniques either, and if they are, they’ve just started recently and are still working on simpler cases.  Most back surgeons in Canada are decades behind the cutting edge in lumbar surgery techniques.  Bernard has put it another way…

“It is not a question of the techniques not having evolved.  Of course there have been gradual advances in the traditional techniques within the existing structure.  The problem is that the existing standard model is grossly oversimplified and insufficient.  And, at a deeper level, the entire framework of understanding the human body in general and the lower back in particular is insufficient.”  

Not that other countries have it all figured out.  Far from it.  But Canada is just so far behind that it’s ridiculous.  If Bernard can get the right tests done, and done well, then there will be a chance to go somewhere else for treatment.  That’s what my optimistic side says, anyway.

Not an exciting end to 2008, but that’s ok.  Maybe it’s the drink talking, but at this moment I’m looking forward to the coming year.
 
Happy 2009 y’all!

 
[Nicole:]

Despair isn’t helpful.  Rather, it slows down any progress that could be made.  But I’m unable to avoid the occasional bout of despair as we try to get Bernard some decent help. 

 
This week I’ve been really down about our situation.  I cried at work, on the phone to my friend Kath, with Bernard, and I have basically been grouchy and sad. 

 
Bernard is declining fast.  He now has constant pain even with painkillers.  He is unable to walk or sit, and we need to get him a new MRI (Magnetic Resonance Imaging).  The last one he had was over two and a half years ago, and his injury has worsened substantially since then.

 
At that time we were in Calgary, Bernard was still working and we even went sailing on occasion, at the Glenmore reservoir in our tiny little sea monkey of a boat called ‘Zee Aapje’.  That seems to have been a whole other lifetime.  Now our days transpire in and around a queen sized bed, and though we try our best to have fun and enjoy life, it has not been at all easy lately.

 
So… he needs a new MRI and other tests too.  We live seven hours from the nearest specialist, who is in Kelowna.  Bernard can no longer travel in my parents’ Jeep, so that makes getting anywhere very difficult.  I’ve been trying to get him help, applying for programs and going to the doctor without him.  This isn’t going to work now.  He needs to be reassessed, and soon. 

 
Our plan was to skip the long waiting list that tends to be a part of getting an MRI, not to mention the difficult trip to yet another specialist just to get on the MRI list.  And, I don’t think we could handle another old school specialist being hasty and indifferent and telling us nothing new.  Instead, we’ve been saving money to go have the MRI from a private clinic.  Our doctor in Nelson said he could book us at one of the private clinics right away. (Family physicians in British Columbia can’t book publicly funded MRI’s.) 

 
But this comes with all sorts of other difficulties.  For example, the closest clinic is in Kelowna, or across the border into the States.  So, it’s either a 7 hour drive to Kelowna in the winter, or a three and a half hour trip to Spokane, WA.  How to get a vehicle that he could travel in?  Borrow?  Barter?  I don’t have a credit card to rent a vehicle with, a fact I now really regret.  And the legality of travelling with him lying in the back of a borrowed vehicle across the U.S. Canada border is also iffy. 

 
I’ve just called Mary, our East Shore health nurse, this morning.  She’s a caring person who may have some advice about what we should do.  Do we call the ambulance and try out the public medical system once again?  They would take him to Cranbrook, nearly three hours from here.  Would they book him for the necessary tests right away and send him on to Calgary for this, or simply send him home with stronger painkillers and another appointment months away?  Who knows.

 
As well, we are going to write a letter to the two specialists we know.  Maybe if we update them on the circumstances, they will consider booking an emergency MRI without Bernard having to make a trip to see them first.  Worth a try… nothing to lose… nada nada nada…