Wednesday, 5 September 2018

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.  

Thoracic Surgery - Seven Years On

Seems a long time ago since Diagnosis, Wheelchair, Walking and 50!
This picture shows how the disc loooked embedded in the spinal cord almost to the point of severing it. The picture of Mark and I propped against a hay bale (my crutches well hidden!) was an image I kept with me in hospital and gave me the strength and determination to prove the surgeons wrong. The wheelchair was a self portrait project I was doing back in 2011. The last two pictures are of us celebrating our 50th birthday's earlier this year!

Well, I can hardly believe I am sat here seven years down the line. 
On the 5th September 2011 the life changing surgery on my thoracic spine gave me back my legs.

The time has flown and my progression has grown with my determination to lead a normal life.

I thought I would add to the blog this year, not only because I am still going strong, but I reached the milestone birthday of 50 and feel pretty good about it!  I look back at the whirlwind of the past 7 years and what has changed: I can hardly believe I went from the diagnosis to where I am now and looking back, it sometimes seems hard to imagine that I actually went through it.

Through this blog and the Facebook page which I help run with other "Thoracic Surgery" survivors, I know that our stories help others who are faced with the uncertainty we faced.   Over the years it has become more apparent that although this surgery is only done in extreme cases, the realisation is that there are so many people out there who are facing these problems, and not knowing who or where they can go to speak with those who have been through it and come out the other end.  I have to give credit to the NHS who were my saviours.  Reading the desperate  messages we get on the Facebook page, it seems that the US are very cautious and finding a surgeon who will deal with the thoracic spine is very difficult.  We have a lot to be thankful for in the UK.

Of course, I have made friends and have bonds with people who have been through the same, the furthest is in America and the closest is almost the next County!

Dave and I had identical surgeries, we had ribs removed and spine pegged with the rib, lungs collapsed etc. so I like seeing his updates.  He is two years post-surgery now and very active.  Not without pain and some niggles but generally back to "normal". We are both pretty active in responding to the questions that come up on the Facebook page because if our experiences can help someone, then some good has come out of it all!
You can read his story here:

Dave, proving nothing will keep him down!

So what has changed for me personally in the seven years since the surgery?

Mobility wise I try to be as active as I can.  I realised quite early on that having a lazy day was detrimental to my health.  It made me ache, muscles seized up and I generally felt rubbish. 

I started with Pilates to help build inner core muscles and really enjoyed it, I liked being able to see how far I could push myself with flexibility!  I also make sure I walk a couple of miles a day. 

My best achievement was exceeding 10 miles in one day - I was pretty shattered at the end of it but I loved the buzz looking at the Fitbit, nailing it and mentally proving them wrong when they said I would always need a stick and potentially have problems.  I have succeeded in doing this on many occasions now, not sure where I should aim my next target though as 10 miles is quite something!

For the last few years we have spent Christmas in Austria getting away from the eating fest that seems to be the norm with festivities and time off work!  I have sledged down a mountainside, climbed up the Zwölferhorn twice now (albeit with the assistance of a cable car) - reaching the top of the mountain on a winter's day at -11 degrees is quite something, the air is fresh, the views are spectacular and you feel invincible. 
This year my aim is to visit the Five Fingers in Hallstadt which is a bit of a hike in snow but the view will be worth it.
Isn't this view worth the effort!

Me aged 49¾ - who says you have to be a grown up!

I have also just completed the climb of the 02 building in London - another achievement ticked off the list and a bit of fun!

Health wise, I have become more aware of changes, pain and problems and perhaps being a little cautious, it lead to me to having a full spinal MRI at Lincoln County Hospital in 2016; 55 minutes in the scanner doesn't get any better no matter how many times you do it!  I got chatting to the radiographer and I asked him how it looked, of course, they aren’t supposed to tell you things but I advised him I knew there were problems with the C5-6 and of course, the "T" spine had been worked on; it turns out he actually knew me! (Way back in the 1990's early 2000's I ran a Fish & Chip shop with my ex-husband and he was a regular at the shop living across the road from me, now I could understand if it was Lincoln but I was in Scarborough at the time - small world!)  He did say that there were bulging discs at L4/5 & S1 and in his experience, he had seen people come in for scans in worse condition than me with lesser spinal problems.  Once I had spoken with my GP, it was agreeable that should things change, I would then go back but for the time being I would keep monitoring it and be aware of changes. 
I think it is easy to turn to panic mode every time we have a scan or X-Ray but if we are all a little more in tune with what our body is telling us, I feel that is a better indication of our health.My pain levels vary from day to day: 
With regard to back pain, the Thoracic gives me no trouble and I like to believe that there will be no more herniation’s at that level.  My lower back from time to time will let me know when I have overdone it! 

The pain experienced on a day to day basis is the nerve pain.  The right hand side of my body was the most affected area with the disc causing the spinal cord injury prior to removal.  I have no sensation to heat which includes hot water, and can burn myself, cut myself, bump and bruise all without knowing!  It's quite a strange thing when I am walking about with no shoes (and to anyone who knows me this is the norm) I have to be a little more careful.  This altered sensation not only affects my leg, it reaches waist level and across the torso.  It also means that internally, there is a constant burning sensation.  I feel like it is on fire and when tired, the leg has painful spasms which are controlled by the use of amitriptyline.  Initially I used Pregabalin but this did not help with weight and I struggled, however the pain relief was immense.  I took the decision to change medication and although I have the pain, it is at a controlled level making the weight is easier to manage.  Sadly a catch 22.

The left hand side (and the lazy leg that lost all use) has full sensation but has hypersensitivity.  It can spasm at any time and is sensitive to touch. 

I never managed to regain the ability to run as the communication from the brain to the legs simply doesnt work.  I am not too bothered by this though as I had never been an athlete!
When my legs get tired, the left leg tends to drag and I notice that I compensate by swinging it out from the hips.  Of course, this has a detrimental affect on the lower spine and I have a noticeable gait on those days which causes a new level of issues.

That said, I fell life is full of challenges and although I have had a few, there are people who face far more in their lifetime and I think my life is pretty good as it is and I have accepted the new "normal" me!  Besides, it is how we handle them which defines who we are.

For anyone interested, this is the link to my
photography which keeps me active and determined to lead a full and active life.

Tuesday, 28 August 2012

12 Months Post Op – This Chapter is Over.

12 Months Post Op – This Chapter is Over.
It is almost a year since I had Thoracic Surgery to remove a T8 T9 disc that was severing the spinal cord.  I can’t believe where that time has gone, so much has happened in that time.
Following TWO surgeries in which they moved the heart, collapsed the lungs, removed a rib and drilled the disc out that was central to the cord (only 80% removed on the first surgery so they went in again ten days later), 23 plus hours of surgery, 4 weeks in hospital with no movement of the left leg whatsoever, loss of muscles from both legs and sent to rehab on a stretcher with a wheel chair I progressed from bed baths, catheterisation, commode and wheel chair to walking with a frame; walking on crutches; a walking stick and the guarantee of a lifetime limp:
The outcome?  I have been back at work since January 2012 - I walk up three flights of stairs to my office, I can walk for miles on a good day when we are out, in fact, being active is better than being sat at my desk or having a lazy day at home!  I am still unable to run though, or indeed run up stairs which is pretty weird!  I walk with no limp unless I am really tired, that was something I was determined to lose, I wanted to look as normal as possible when I am out. 
My rib cage still hurts and is tender on some occasions; I have no sensation in the stomach due to nerve damage, possibly from the two chest drains; I have severe nerve damage due to the damaging disc, this affects the sensation in my right leg - I cannot feel hot or cold which I learnt very early on when bathing!  It feels like it is constantly on fire and the "restless legs" are improving with medication.  I have been taking Pregabalin which was a life saver in one way but increased the weight gain in another so I am weaning myself off that and trying to cope as best I can.  The scars are fading well, in fact, the only really prominent ones are from the chest drains and they look like little stars J
I have fallen over a couple of times too because the mind and legs don’t communicate I can’t "fall" properly if there is such a thing!  I land flat; the legs just don’t want to bend so I may need to work on that one!
In a year my life has changed completely.  I can’t take for granted a body which I thought was invincible; I live every day fully (and am exhausted most of the time!) Housework can wait if there is a better offer of a day out and we fill our weekends with so many things, I actually wonder what I did before!   Most of my days are good and upbeat, although I do sometimes have days when I am so moody and down about things I have to shake myself out of it, or even more, have Mark or even Laura give me a talking to if I REALLY push things!  I am human after all!
Just to reassure anyone and any of those facing what I thought was the worst nightmares of my life, you CAN get better, get through major surgery or the obstacle that you face and have a normal life - you just have to change what you define as “normal” and live life as positive as you can. 
I believe it was the positive attitude that got me through something I never thought I would face the loss of my legs and strangely enough, last night I watched “Harry’s Heroes” which featured people who had faced far worse disabilities and overcome them.  I remember watching the first one just prior to my hospital appointment and they were inspirational in keeping me focused on what the body can achieve.
I am now putting this chapter behind me and moving on.  I wanted to start this blog as hope for anyone else facing the same as when I first heard about this I had no idea what was involved or what lay ahead.  I know it has helped two people, one of whom I am good friends with, Robin, and I know I will meet one day.   If you would like to contact me then please feel free to do so, sometimes it isn’t about knowing everything that lies ahead; it’s the quiet reassurance that we CAN get through things and having someone to talk to.
Caroline xxx

Thursday, 2 August 2012

11 Months Down..

Eleven Months Down…

It's now eleven months since I had the first operation followed by the second one a few days later.  For those following progress, this is just an update.

Life has returned to normal regarding work, back full time at work and home.  Life is busy; every weekend is filled with something to do.  Having been through what I have, and how much we take our lives for granted, our bodies that constantly have to take the wear and tear of each day I want to make the most of my life and not sit back waiting for it to happen.  I am also conscious now that having taken for granted good health and relying on my body not to let me down doesn’t just happen, it does require some help in the form of a better diet and more exercise. 
With regard to the surgery:  Well, the rib pain is easing and some days feel better than others.  I don't take any pain killers for them now as I feel the body has had enough to cope with.  The nerve damage is still evident in the fact I can't feel the tummy area, again, I think this is down to the removal of the chest drains but I can live with that.
The left leg is getting stronger and the right leg, despite being the best one on leaving hospital is still nerve damaged with altered sensation and tends to go into spasms when I get tired.  I find that moving about a bit and massage does tend to make it feel better.  I have reduced the Pregabalin which I take for the nerve damage from 300 mg a day to 75 mg with the ideal of dropping back to 25 mg in time.  Sadly the medication did contribute to weight gain which I subsequently read about and it is a very common side effect of it.  Therefore, reducing the medication and losing some weight surely has to be a "win win" situation?!

We have just also returned from a short break at Center Parcs.  I went in the pool each day (didn't do the rapids though!) but was able to do everything else as normal; I played Badminton without being able to run for the shuttlecock (still haven’t mastered the art of running!) and we walked and cycled everywhere.  I was nervous about getting on a bike but I needn’t have worried, despite a few wobbles, it was easy enough to get back in the saddle! 

I have even noticed that all of a sudden, the limp is less prominent than it was before, and I put that down to extra walking and cycling. 

Wednesday, 30 May 2012

8 Months on - Never Straightforward

On Tuesday 30th May I finally had my appointment to see my surgeon who operated.  It was a six month check and I had a list of things I wanted to ask.

We got to Sheffield and five minutes after our due appointment (bearing in mind there were a lot of others waiting before us) we were told he had gone into a meeting and would have to cancel appointments or see the registrar. 
I wasn't too impressed by this, we had made a two plus hour drive to see him to be told this.  We decided that we may as well see the registrar and see what he had to say.
Finally in he read through the notes and looked at the MRI scan.  Gravely said to me, "you are lucky to be walking, looking at this you shouldnt be".  Reassured that the surgery had been a success despite the ongoing problems.
We didnt touch on the t8-t9 surgery too much, he looked at the notes and the scan pictures of the MRI taken relating to the neck and the C6 disc. 

This wasnt such good news.

There is a narrowing of the spinal cord which, at present doesnt need surgery.  However, after checking that my arms had strength and there didnt seem to be any issues there, he told me to keep a close eye on what was happening.  If ANY changes were to occur then I contact them and go to the top of the list. (that doesnt reassure me like it should). 
His words, which still seem to sit badly with me were "whereas we were looking at paralysis from the chest down with the thoracic discs, with the neck we are looking for paralysis from there down". 

I feel I have been given a life sentence and a ticking timebomb that could go wrong at any time.  My positive side says "forget about it, live life and get on with it" - the negative side which is kicking in right now says "oh god, I am going to end up in a wheel chair after all and there isnt anything I can do about it".  I know this isn't rational thinking but I feel once again I am thrown into a turmoil with something that is out of my control.  I hate it.

My main aim now is to lose some (remaining steroid) weight to reduce any risk on my spine whatsoever; put it to the back of my mind but be aware of any changes in my body and focus on the good things. 

You really don't know what is round the corner. 

Felt much better after a holiday in the sun :)

Tuesday, 15 May 2012

No news is good news??

Well instinct was right, I knew that something wasn't quite right.

The results eventually came back from the scan and my doctor called asking me to come into the surgery.  To say I wasn't worried would be a lie.  I was a little upset as I left work that night and made my way there.
My doctor is very good at detailing information and as soon as I went in, out came the books and the diagrams as he went through the results of the scan.  There are multiple probloems from the C4 through the neck to the C7; the C6 being the prominent one that is causing me problems.  He has written to my surgeron in Sheffield who responded and wasnt unduly worried and said there was nothing "sinister" in the report.  He did however want to see the scan pictures so I will await a letter from him to see what he thinks.  My doctor said that this is likely from either being a rugby player (well, THAT is something I am definately not!) or a major traumatic accident - explaining that the car crash some 25 years ago has now come back to haunt me. 

It also explains the migraines - C6 is linked to migraines, so at least I can explain that one. 

Right now though there is no talk of surgery so its business as usual and get on with life.  The pain has diminished from the neck and shoulder and the only evidence of something wrong is the right thumb feeling numb and tingly.  I can live with that but it really does make texting on my phone a problem!!!!

Note to him upstairs - Please could you give me a little break? I'm trying to get the other spinal problem sorted right now so if you could cut some slack and let me get on with that without throwing more problems into the pot

Thursday, 5 April 2012

One Step Forward.....

One step forward, two steps back is what they say isnt it?
This week it certainly feels that way.  I am walking about without the stick now, feeling much more confident as the days move into weeks and am beginning to feel normal again.
So, when an achy neck and shoulder gradually gets worse and feels so bad it is keeping me awake at night, I figured I would see the doctor.  The pain radiates from the neck and down the right arm, all the way down to my thumb which has now lost feeling, the numbness and tingling has just touched the two fingers close to the thumb.
Am starting to worry now.
The doctor prescribed Naproxen, a stronger version of ibuprofen I think.  His words then were; if it doesnt improve after Easter, come back and see me and I will arrange a scan as it could be the C6 and C7 disc pinching the nerve...... oh god, dejavu.......
The week has progressed as has the pain and the tablets, although making me feel sick, have not done much in the way of pain relief so I rang the surgery and asked him to call me. 
Perhaps I am paranoid, but gut instinct has now told me to listen to my body and something just isnt right.
He rang me back, still I feel paranoid but he is ok about it, can I travel to Bradford for a scan? It would be quicker than waiting? Absolutely yes.  It's not booked for Friday 13th at 9am.  I am hoping the date isnt a bad omen!
Fingers crossed this can be dealt with quickly and non surgically, I really have had enough of hospitals for a while now!
Now I just have to sit and wait to see what the outcome will be - keep your fingers crossed for me xxx