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.