A little bit about me!
I was mid to late 50’s
(now 59) and undiagnosed as Coeliac for years. I was pretty active and could
ride a bike reasonably fast and far and recently got into open water swims
(2012). Liked a drink but decent weight for my height, don't eat rubbish food and have a desk based job.
Pre Diagnosis – small health issue to large health issue … what’s going on - I don’t know?
Pre Diagnosis – small health issue to large health issue … what’s going on - I don’t know?
It
took about 2 years to diagnosis (2014) - I was aware of my feet hurting (a lot)
after walking and some proper hikes, generally I lost confidence in my balance on
some trekking down-hills.
Over
two years this progressed and I got steadily worse, (up to Aug 2016) – pins and
needles both legs, hot and cold sensations in lower legs like a hair dryer or
freezing cold water on my shins. Standing up after sitting at a desk (my job)
became slower and slower (I tried to make sure no one saw me get up slowly and
hold onto furniture to walk, having to be aware of falling options). A few
‘light’ moments whilst driving, hitting the accelerator instead on brake pedal
and wondering why - thankfully no one
was harmed). In retrospect there were also additional issues with my ‘plumbing’
which I misread to be age related; waking in the night to nip to the loo … get
there quick and don’t hang about! I was
also constantly very tired and in spite of the exercise and just wanted to ‘lie
down’. I thought maybe it was just an age thing …
GP visits over that period – loads and felt that nothing was significant
was being diagnosed.
- Got a lumbar scan – all normal
- It wasn’t until the following year when I knew things weren’t – had a further scan and a review for my nervous system (can’t remember the term), tested for MS and also ataxia. All to no firm diagnosis.
In
September 2015 I cycled with a couple of chums coast to coast in a week’s cycle
holiday as we had done so for years, Newcastle across to Bowness-on-Solway and
back – no problem but my feet really hurt (cycling shoes and age?).
In
May 2016 my legs really bad, I fell and broke a bone in my hand, my legs were
just really unreliable. I was still
exercising and going to the gym although I couldn’t identify if any particular
exercise made it better or worse! I was generally just feeling increasingly
uncomfortable rather than any screaming pain and waking during the night. Balance
on my legs was just rubbish and occasionally just dragged my feet.
From
May – Aug 2016 I had a couple of visits to GP but was no further forward – in
retrospect what was finally diagnosed is so rare I can (to a degree) understand
why they did not do a Thoracic scan.
In
August 2016 at my wife’s insistence, we had an appointment at our local
hospital and saw a doctor at A&E. After a review he suggested an MRI scan
of my thoracic spine.
A
week later I had the scan at 11.00am and went back to work to find a message on
my phone at 13:00 ‘contact GP urgently’ – I did so and they said pack a bag and
get into A&E this afternoon..…
The diagnosis …
A classic
case of T8/T9 disc herniation with the calcified cap adhered to the cord and
the cord being compressed to a serious degree.
Lots of different orthopaedic specialist folk and students checking me
out and tests etc.
The “conversation” pre-op from 3 consultants
(and I understand why) went like this … “if we don’t operate you will be
paralysed from the navel down, and if we do there is a strong chance that will
also happen.”
My
view was neither being brave or gung ho,it was simply this… ‘crack-on and get
the f***ing thing done!’
The
night before the surgery, I walked around the hospital grounds on sticks and
the walk got progressively worse. Family visiting and saying their goodbye’s
was probably the hardest part.
Personal carpentry
All
nil-by-mouth overnight and in the pre-op place at 9.00. All good but the anaesthetist
couldn’t get a needle in my spine so I sat hunched over watching drips of sweat
fall from my nose … then she said ‘I have another way’ (she must have …I
couldn’t recall anything else after that!).
Apparently
it was 8 hrs of surgery with a ‘signal moment’.
They
went in via the RHS (thoracotomy), parted the ribs, deflated a lung, removed
the pesky herniated disc and not the calcified cap, plugged the gap with a bit
of rib and stitched me up again.
Recovery – Important part
All
I remember is vague intensive care for a day or 2 - I don’t know...
7
days in hospital with one moment where my lung collapsed 2 nights after op, I
remember some staff panic and being very hot and very cold and then sleep.
I
got fed up with the drips/canulla’s and constantly being stabbed for tests but
hey ho, it was a small price to pay.
In
retrospect I must have been high as a kite on morphine - I had very vivid/beautiful/disturbing
dreams!
What
I really wanted was to be at home, normal life, having a shower and a toilet to
sit on – my recovery was far from any of those things!
Reality
was that I was in bed and couldn’t walk.
Recovery – Going home and 2
years
Discharged
from hospital a week after the op, I was glad to be going home/ Thankfully my wife is an ex NHS physio so all
the (OT) kit I needed was at home and sorted. I am very lucky.
It
was so hard clutching the banister rails slowly going up and down stairs but it
was just fantastic to be home with my wife and kids!
My
recollections of being ‘half-awake’ throughout the night to take morphine at
4.00am and then drifting off again. It was the strangest time and I have
memories of owls, cats and street conversations!
My
next big step was to be able to sleep on my side and not flat on my back!
Recovery - the reality of a slow recovery but the
positive realisation
Having
never had to go through anything like this before I assumed I would be fine in
a few weeks and didn’t want to focus on the negative … this was a hard lesson
to learn. It wasn’t about being weak, it was called recovery and learning to give my body time, after all,
it had been through some major trauma!
It
is difficult to summarise the recovery – small steps, physio and pilates
helped, realising my legs worked OK and walking more (from chair to frame to
sticks to walking to shops). A small bike ride Nov ’16 made me feel so
fantastic I can’t communicate it!
Now,
two years down the line I still get an almost constant intercostal ‘pain’ (its
uncomfortable rather than proper pain) and by the end of the week at work I am
tired (more than normal) and just want to lie flat. I am on some pain meds that
really take the edge off for me but generally, very happy indeed, after all,
they had saved my legs so this niggly pain is a small price to pay.
In
May 2017 I managed a 40 mile bike ride although it was pretty uncomfortable the
entire way round. The same ride in 2018 saw me being faster and stronger and
only uncomfortable for the last half hour. Progress!
It’s
been a long haul (which is ongoing) but a good haul and I feel lucky, learning
along the way (thanks to our wonderful NHS and my wife).
I
feel my experiences can be a positive for anyone facing this in the future and
hopefully it will get recognition that this type of surgery although rare, is
becoming increasingly more common.
