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:
http://thoracicsurgery-backtolife.blogspot.com/2018/09/thoracic-surgery-daves-story.html


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 https://www.flickr.com/people/cazzie21368/ which keeps me active and determined to lead a full and active life.



















































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

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. 

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 :)

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
?!!!

6 Months Post Op’s – Time to Reflect

So, it’s my 44^th birthday.  Last year on my 43^rd I was adamant that I didn’t want to be 43 as it had a bad feeling – they say trust your instinct and I certainly felt it was a bad number! 

It’s hard to imagine that it is now just a little over 6 months down the line from the operations, all of those days in hospital seem a lifetime ago and life returns to “normal”. 

Physically how do I feel?  I have now removed myself from all the pain killers.   I now just rely on the Pregabalin for controlling the nerve damage in my legs, by taking these a couple of times a day, it seems to have calmed things down, although they do feel like they are on fire but they aren’t as jumpy!  The rib cage is still very painful and I sometimes feel a dull ache in my back, but if I can handle this on a day to day basis with the occasional help from over the counter pain relief, then I think I have come a long way. 

Last week I started walking about without the walking stick.  It folds up into my bag and I like the reassurance at the moment that it is there; I still get tired but that’s just down to general fitness and I think that once the good weather has arrived things will improve considerably and we will be able to get out and about and walking again.   I concentrate when I walk and make a conscious effort to try and control the steps and not become lazy when I walk.

Mentally I have a few issues with what has happened to me.  There are always people who are worse off than you however some days self pity and self loathing do take over and I do get down about what has happened.  Maybe it’s impatience on my side but I want to be back to my normal self again, right now.  I sometimes sit and have a cry, looking at the picture on my desk that was taken in London, I wonder where that person is, how much I hate the body I am now living in and feel that there is a further battle ahead in trying to get back to being that person.  I know I can do it but there are some days when it really doesn’t feel like it. 

I know above all I am thankful for what the surgeons did for me, their swift actions into operating that have ultimately saved my legs; nurses and doctors who helped me through those days; the support of my friends both near and far and colleagues who keep me smiling and are there for me when I feel a bit tearful at work and give me a hug; to the “Facebook” family of friends I have and their support over the last few months and their lovely comments when I am having a sleepless night and post messages (and I thought it was only me who had sleepless nights!)  Most of all I have the love and support of my family who have been strong and brave throughout this.  Their never ending patience with me (being a bad patient!), their constant support to friends who have asked and wanted to know more, for carrying on with their day to day lives and still making time to come and see me and look after me. 

I am now looking forward to a fresh start, renewing my interest and work in photography and taking each and every day as it comes. 

So today I feel I am allowed to celebrate my 44^th birthday – life begins at 44 now!!!!

A New Year and a New Start

Happy and settled at home, I went back to work full time after Christmas.  Initially I struggled with the days and felt tired, but gradually my strength came back and I felt a lot better, in fact, I think work progressed me to a certain degree. 

However, there was a further downside - just when would things go right?  My hair had started falling out and I didn’t know why, I thought maybe it was the medication but I had been on it for such a long time I figured my body would be used to it.  I went and had blood tests and they all came back normal, thankfully.  I didn’t want to start the year with another problem.  I then talked to the practice nurse, who said that the body had been through so much trauma that usually about three months after such things, it closes down and tries to repair the body where it is needed, i.e. The ribs, lungs and heart etc.  Now while this is all very well, any woman will know that your hair is important and is more visible than the inner organs and I was pretty devastated by this new setback.  My lovely hair, which I took pride in, was looking pretty sad and sorry for itself and coming out in handfuls.  However, once I realised this would be a short term thing, I stopped worrying.  I figured that if I worried more, the worse it would be.

Gradually, I am pleased to say it has stopped falling out and is starting to grow back.  I have been taking Well Woman tablets to boost the vitamin intake, just give the inner healing a little help!  My next aim is to tackle the steroid weight which seems to have settled around the body.  Hopefully with more movement, this will in time come off and I will get back to how I used to be.

I have reduced the medication now to just one Tramadol a day and intend to drop that by the end of March.  The ribs still hurt but each day it becomes a little easier.  The legs are getting stronger, and although a little lazy with the physio exercises I realise the importance of these to get the body to a place where it will naturally be – the surgeon said that by about 18 months post op, however I am at that stage is where I am likely to be for the rest of my life so it is my intention to help it as much as I can.  This isn’t always easy when you get home from work and feel tired and want to fall into bed!  Mark bought me an exercise bike and I am going to use it more to strengthen the legs.

I have a holiday to look forward to in May, a week in the sun, and I think we deserve a little bit of “time out” after what we have been through, both mentally and physically.  I still have issues with my weight which is still there after the steroid intake, and I know it isnt the end of the world, but I dont feel I have any body confidence now.  The shape I am, the way my legs work and how I look; I need to get myself into a state of mind that will improve positive thinking.

Christmas 2011

Work and Normality

I decided to go back to work at the beginning of December.  I had been off for three months and I needed to be paid a normal salary again. 

Initially, I was going to go back full time but I started back on the Monday, and by the end of the day I was exhausted.  I had moved office (still on the third floor!) and everything had changed round.  I was tearful for most of the day, and felt like a fish out of water, I wanted to go home and feel secure.  I spoke with my boss and agreed to do three days a week until the New Year when I would see how I was.  This worked better for me as I could have Tuesday and Thursday to recover.  I was still on heavy doses of Tramadol, Declofenac and Ranitidine just to keep the pain at a level.  Once New Year came however, I was determined to drop this dose down bit by bit and manage the pain level myself.

Working in the office all day and then starting again at home was tiring.  I felt physically and emotionally drained.  I would cry at anything and some days the pain in the ribs was so intense I didn’t know what to do with myself.  My legs felt useless and I would go through stages where I felt sorry for myself.  I did get told once to “stop feeling sorry for yourself” but to be honest, I felt I was entitled to feel like this once in a while after what I had been through!  I had sleepless nights and often lay awake thinking back over the last few months and how things had changed in my life.

I had up and down days; my mood swings were frequent and I would cry for no reason.  I think sometimes it was just sheer exhaustion that did it and I looked back to when I was a child and wanted that security again, of not being in pain, of being "normal" and not wanting to be responsible any more.  It seems a strange feeling to have but there were days when I really wanted to give up on everything.  This was hard on my family at times and it was hard to try and explain how I was feeling, I don't think I ever did, it's sometimes just easier to pull yourself together and live with it.

I no longer had the ability to run, (not that I was a runner!) jog or even get myself up and down off the ground easily.  I had to learn how to walk properly, how to make sure my foot wasn’t rolling to one side, think about straightening my body and the alignment of my hips!  No one teaches you to walk when you are a child so it is so un-natural to learn to do it as an adult!  I wonder if I will be able to do the things I used to; outdoor photography, portrait work, did I even want to?  I felt a long way off from wanting to do anything to be honest.


Mark bought me a car for Christmas, we traded in the sporty Puma and got a practical car in which I can get in and out of. I love my new KA and started driving in January this year. :-)

My new KA - a fresh start driving again.

Progress

Physio continued from Louth Hospital on a weekly basis, I was given exercises to follow and goals to aim for.  I also had an appointment to see my Surgeon on the 23^rd November in Sheffield, I was determined to be walking by then.

When we arrived for our appointment, I was wearing the knee brace, I was using ONE crutch to walk with.  When I was called in for my appointment, I stood up and walked into the room.  The registrar who I was seeing said he was amazed to see that I was walking,  he said that when he called me, he was expecting to see me in a wheel chair and totally incontinent, having read the notes on my hospital file.   That made me feet ten feet tall knowing I was a little bit ahead of what they were expecting!  He talked to me, checked my wounds which were now healing well and then Mr B came in to see us.  He too was amazed at how well I was, quite dumbfounded by the recovery I had made to date, being as it was only two months post op and the last time he saw me I couldn’t walk. 

I explained about the nerve damage to the right leg, and they both suggested a drug called Pregabalin which should calm the nerves.  I was already on one that my doctor had given me but felt it was not really helping. 

He was pleased enough with the progress he said he wasn’t needing to see me for six months.  Six months!  I most definitely would be walking by then and hopefully with no limp, or dragging the foot. 

When I walked out of that hospital, I felt such a rush of enthusiasm and hope that by May 2012 I would be in a much better position and hopefully on the way back to normality.

Scars are healing well.

A New Lease of Life…

Ok, so I could say life returned to normal?  No.  It took a lot longer to get anywhere near. 

The first two weeks whilst the legs were still weak, I had to have help getting in and out of the shower.  Dad fitted me a hand rail on the wall above the bath which proved invaluable. I could dry myself and do everything I needed, but that was it.  Mark was at home the first week and would help me on the stairs as I concentrated on each step, mentally going through the routine we had done in hospital.  Laura was with me for the second week when I became a little more confident about the house.  However, if she went out I would make sure I was sorted and didn’t need anything and stay in the bedroom.  I felt so useless and I think I was a little hard on myself in expecting things to return to normal almost immediately; when you are used to doing your own thing then it is harder to rely on other people.

On the third week, I was home alone.  I had the community nurse coming in to change my dressings and Yvonne would call round to see me.  I would then be downstairs while I had company.  I made sure everything was done before getting back upstairs and staying in my safe haven until either Mark or Laura returned home. 

One day when I was able to get myself in and out of the bath,  I decided to have a soak, Mark was due home late and Laura was out so I thought a bit of relaxation would help. Hmmmmm, hadn’t really thought that one through though!  I filled the bath and got everything to hand, stepped in with the right leg, held onto the rail and lifted the left leg in to find the water temperature WAY too hot.  That was the day I discovered the nerve damage in the right leg was severe and I had no sensation to hot or cold.  Not the best way to find out however!! 

Once sorted, I got myself sat in the bath and realised that with the dressings still on the back, I wouldn’t be able to lie down, thus realising it wasn’t going to be such a relaxing time after all.  I made the best of it and then decided to get out, another dilemma!  Two legs which were un-co-ordinated, didn’t know how to get out of the bath!  In the end, I drained the water, got myself onto my knees and then pulled myself up with the rail and the side of the bath.  Wasn’t going to try that again in a hurry!

I soon learnt to do housework things as I became more mobile, and with the aid of daytime TV (it bores you so much you WANT to do housework!) I managed to do a little ironing, washing and even cleaning the fire out with the use of the Zimmer frame to help me up!  By the time I had done even the smallest chore, I was ready for a rest but it was progression. 

I lived for the weekends when we could go out.  The first weekend we went out was football that Mark coaches; I spent the entire morning sat in the car watching the autumn leaves blow around, the sun was bright but the air was cold, it didn’t matter, I just loved the feeling of the open space. 

Being out in the wheelchair was another thing though.  Despite my initial thoughts on not having one, reality was that I needed one.  I was unable to walk any distance so if I wanted to go into town or to the shop, I had to use one.  After calling into work one day to see everyone, we went for a walk around town.  I got so upset at not being able to get around, the pavements being uneven and hazardous, the roads intimidating and the shops inaccessible, we gave up and came home.

Even the run up to Christmas saw me getting equally frustrated at shops.  I was good at manoeuvring my vehicle but shops packed their displays so tightly, I often found myself stuck.  Mark would joke that he knew where I was because he could see something moving and not see anyone standing!  I realise how, as a nation, we are not disabled friendly with card machines at silly heights, displays not accessible and worse still, the attitude of people towards a wheel chair user.  Mark generally pushed the chair and shop assistants would speak to him instead of me.  That was something that angered me immensely.  I was in a wheel chair, my disability, albeit temporary, were my legs not my mind!  Even other shoppers were less than patient with the wheel chair – I challenge anyone to spend a week in a wheelchair, let’s see if their attitude changes then!  I also noted that people would be less considerate when parking vehicles; I don’t have a disabled badge and don’t intend to get one, but people seem to abuse them, I now have a different understanding of disabilities. Rant Over!

Autumn

Homeward Bound

We drove home on the Friday evening. It was a lovely evening but I don’t remember much of the journey; I was sat looking out of the window, looking at everything I have always taken for granted, our beautiful landscape, seeing people running, walking laughing, life going on around me as it had been whilst I was in hospital. 

I am not ashamed to say that I envied people with “working” legs.  I hated how mine had become, hated seeing what the steroids had made me into, changed my shape completely, and although I was now off them, and they had helped reduce the swelling around the spinal cord, I resented them for this body I was now living in. 

Although mum had prepared food for us, what I really wanted was a curry, so we stopped and got an Indian take-away.  I was so used to bland (although pleasant) food in hospital; I really wanted something with flavour.  We had mums dinner the following day J

Going home was very strange, almost alien like.  It felt so odd walking back into the house I had left six weeks previously.  My cats were a little apprehensive about me being back and whilst Mark unloaded the car, brought everything in and settled me down, I sat on the sofa and cried again.  I don’t know why, emotion just over took me.  I was scared about being out of the security of the hospital where everything was safe and done for me if I needed.  Now I had to learn to, quite literally, stand on my own two feet. 

That night in bed, Mark and I held onto each other; our own peaceful sanctuary, just the two of us.  We didn’t have to talk, I don’t know what he was thinking, but I just thanked god I was alive and home again and with a little bit of work, and the help of my surgeon, I had my legs back and that, a start of a new future.

New Legs

Light at the end of the Tunnel

It was confirmed by Physio and after an assessment, as long as I was able to walk up and down stairs with the aid of a stick, I could go home.

I exercised those legs like never before.  Physio had got me a knee brace to hold the knee in place to stop it kicking back, they also ordered me a new foot brace but I tried it with the knee brace the two wouldnt co-ordinate and I fell over.  I felt so silly lying on the floor and it took three of them to get me up, I cried purely because I had become so dependent on other people and couldn't do everything for myself anymore.

I prepared myself to go home, six weeks after going into hospital for Transthoracic Spinal Surgery I was going home.  I had a lot of physical work ahead, and a lot of emotional issues to get over, but I was going home! How exciting!

Everything was ready at home, mum, dad and Yvonne got the house ready for me; There were a few problems with the house, electrical issues that needed dealing with and I tried not to worry, dad would sort it, my main aim was to concentrate on getting out!  Physio assessed me on the stairs and said I had done well and they saw no reason why I couldn’t go home.

Friday came; I went through my regular morning routine, packed my bags and prepared myself to leave.  I had bags of medication to see me through and a list of things to do. 

Jean, Caroline and Gill, my fellow room mates, were all sad to see me go – whilst I was sleeping in the afternoon they got me a card and all signed it.  It made me cry.  I knew these people for two weeks, yet we had such a bond with similar spinal problems.

When it came to leave, Gill was in tears, there were hugs all round, even the nurses were sad to see me go but for the right reasons. 

Mark arrived and when I was finally discharged, he wheeled me out to the car in my own new wheelchair and we set off for home.  He was going to be living with me permanently now, my life had been taken off hold and had just begun again and i was nervous and apprehensive about what was ahead.

Fresh 

Rehab

The ambulance journey to Lincoln was not the best, I wasn't sure if the driver was aware that I had just had spinal surgery but he seemed to hit every rut and pot hole on the road.  Although the sun was shining and it was nice to be out in the open after four weeks in a hospital with no air and clinical smell.  I chatted to the assistant who sat with me through the journey, and dozed the best I could.

It was a Friday when we left Sheffield, I text Mark as we got to Lincoln and felt like I was home once we passed his place of work.  On arrival in Lincoln, I was wheeled to the Ashby Suite and given a bed, lunch was on its way for me and I was given a Zimmer frame immediately as I needed to use the bathroom.  Physio observed how I was moving and from that she could determine what work we needed to do.

I had the weekend to settle in to my new ward; Jean was across from me, she had been in since January; Gill was in the bed next to me and was from Louth, very close to me and shortly after, a lady called Caroline arrived and was the fourth of our little group.  We all got on well, chatted, and laughed and it felt comfortable. 

Physio started on the Monday and I still had little to no use in the left leg so I had to start building some muscles up.  I was given exercises, a slide sheet and off I went.  I exercised every day on my bed, even if I woke during the night I would try and pull my left leg towards me and make it move.  Gradually, things started to change and I could move my leg from side to side and up towards my chest.  To me this was a major achievement and I was ecstatic.  I was using the Zimmer frame to get me to the bathroom, and they gave me a wheel chair to use so I could get out and about.  This was particularly good news for when Mark came to visit.  He came every lunch hour and every evening after work, I saw much more of him.  Mum and dad were able to visit more often too being just a few miles down the road, and I also saw more of Laura.  Things were looking up!  Visiting time I was always up and ready to go out in the wheelchair.  Mark used to take me to get a coffee from the machine and we would sit outside in the late summer sun.  Even though it was October, it was really warm and the simple pleasure of being outside was good enough for me.  We did laps of the hospital and I learnt to manoeuvre myself really well with the wheel chair.

I didn’t always want to use the wheel chair though and when it came to having our dinner or tea in the dining room I would often use the frame to walk me down there.  Of course, it took longer but I figured that getting down there in the wheel chair wasn’t going to get me walking any faster.

I also became more independent with everything else.  I was able to get into the shower on my own, slightly unsteady on my legs as I transferred myself from my wheel chair onto the bath seat but I did it.  I also refused to have help when I needed my curtain pulling round me, which was often a source of amusement as I tangled muself up in it trying to close it!  The nurses offered to help but if this was rehab then I had to learn to do everything myself as they weren’t going to be there at home for me.  It took longer and was clumsy  but to me it was one step closer to normality. 

I had a regular routine; showered every day, made sure everything was in easy reach of the shower, dried and did my hair and make up (just enough to make me feel like me!) and dressed. 

The days were filled with talking, eating, exercising and sleeping.  I was able to self medicate so I got familiar with what tablets to take and when; initially there were so many I couldn’t keep up, gradually, I became expert and remembered to take them at the right times. 

My pain was well controlled and all I could feel was the sites of the chest drains which still had dressings and the wound from the surgery.  The dressings were changed regularly but the second chest drain site was taking longer to recover and was messy, it felt sore too, possibly because the stitches had been left in longer than necessary?  The ribs felt incredibly sore and tender but I guess gradually over time that would ease.  Whenever I went into the bathroom I had a look to see if the missing rib had made a difference to the waistline, sadly not visible yet!!!

Days in Lincoln went quite quickly and it was a more spacious ward therefore felt better.  We had fun and laughed, and being able to get out in the wheelchair made a huge difference. 

The more times I saw Mark, the more I would get upset at leaving time and have a little cry once he had gone.  I had been in hospital for five weeks and I desperately wanted home.  I just had to convince them that I was strong enough to walk and I would be able to cope.

My ray of light came when I spoke to physio who said there was a possibility that as I was making such good progress, I may be able to go home the following week.  I was so excited, but at the same time, didn’t want to build my hopes up that I would be able to leave, after all, I had been in hospital for such a long time, I had begun to give up hope!

Just a few to keep me going....!

The final Countdown…

I was becoming more mobile as the weeks went on.  I was still on a lot of medication but none as strong as the morphine. 

The highlight of my freedom to move was when I was allowed a shower!  A proper shower so I could sit in a bath chair, wash my hair, clean myself and feel the simple pleasure we take for granted.  I think I bored the poor nurse with my excitement at having a shower!  The first time I had one, I sent her off to do something else so I could sit alone and enjoy the peace and quiet, and the never ending stream of water.  I must have washed myself at least a dozen times before submitting to getting dried and back on the ward.  The simplest pleasure that I took for granted - how I had missed it!

My aunt came over to visit me the day before they moved me.  She stood at the end of the ward and looked round, then walked out.  She hadn’t even recognised me.  I had my hair pulled back and the steroids had given me a round face, I can understand why she didn’t recognise me and although a little upsetting, I later found it funny, the steroids had clearly changed my face beyond recognition to even some members of my family!

Physio got me up and moving and the leg was still showing no sign of wanting to move without help.  I remember the day when Physio brought me in a Zimmer frame and I went from the bed to the end of the ward, one leg moved forward and she lifted the other leg.  Gradually I was able to drag the leg with the aid of the hip doing the work but I was up and those muscles that had been in bed for so long and had disappeared, slowly started to appear.  I was given a foot brace to put inside a shoe which stabilised the foot, slow, slow progress but to me it was a major breakthrough.

Eventually, I heard talk of moving me to another hospital close to home whilst they waited for a space in rehab; either in Sheffield Northern General of on Lincoln Ashby Suite.  In the meantime, they were sending me to Grimsby.  I was mortified.  Didn’t want to go and sit in a hospital bed and wait, perhaps even be forgotten about.  I got upset and stressed and they calmed me down; however the day before the ambulance was coming to take me to Grimsby the nurse rushed in to me, excited and smiling, Lincoln had a bed.  They were sending me to Lincoln! I would be across the road from where Mark worked, forty minutes from Laura and close enough for friends and family to visit.  The excitement couldn’t be contained; I was going to be closer to home and having rehab that would see me walking.  This time the tears were of relief.

The day before I went, I managed to drag my sorry state of a body all the way to the toilet with the aid of a Zimmer frame and physio; it was the most exhausting thing I had ever done but again to me it was another achievement. I did have to have a wheel chair to bring me back though and was quite funny being pushed along with a zimmer frame above my head!

On my final day in Sheffield, I packed up all my belongings, and waited for the ambulance to take me to Lincoln.  I was sad to say goodbye to the nurses but was looking forward to rehab.

Bit of light reading!