Thoracic Surgery - Dave's Story

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?

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.

This cannot go on and I need to understand what is going on …

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.