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

Wednesday, 21 March 2012

6 Months Post Op’s – Time to Reflect

So, it’s my 44th birthday.  Last year on my 43rd 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 44th 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