I know I haven’t posted anything in ages but I am going to
try and start blogging regularly again. As probably most of you know, I have
been wanting to have my leg amputated for the last 18 months or so. This is
because for the last 2 years I had been suffering with severe ulceration on my
CRPS foot which has meant I had to have in a plaster cast and dressed under
general anaesthetics, sometimes as regularly as once a week. I had CRPS for 4
years but it wasn’t until August 2014 when it became much more than just the excruciating
pain. My skin broke down into deep ulcers and despite skin grafts and many
other operations (53 to be precise) and nothing would keep my foot healed.
On the 18th July 2016, I had my leg amputated
below the knee and today is exactly 1 month since
my operation. It’s crazy to think about all the things that have happened in
that month.
I don’t think I will ever forget the day of my amputation.
When it finally came around I was so excited, I actually couldn’t wait to get
to the hospital and at this point I wasn’t at all nervous. I just couldn’t
wait, after such a long build-up to the operation I was so happy that there was
an end in sight. When we arrived at the hospital it was around 12 noon. Mum,
Dan and I were taken to my room and I was admitted. Both the surgeon and the anaesthetist
came to see me and explained all their plans and once they had left was when
the countdown to the operation began. It was an extremely long 5 hours of
waiting and because my leg was infected I had to go last. It was so long in
fact I think I fell asleep around 3pm because I was so excited I woke up at 5am that morning. Before
I fell asleep, we did some Lego, watched some TV and just generally talked
about how excited that it was going to be over and done with. I wasn’t nervous
at all until at 5:30pm the nurses came and told me it was time to go. I got on
the theatre trolley and went down the corridor and down in the lift to the
operating theatres, during this time I was starting to worry about what might
happen. I was taken straight into the anaesthetic room and the nurses were trying
to make general chit chat but I can’t say it really took my mind off it that
much. I can’t have been in the anaesthetic room more than 5 minutes before they
told me that they were going to start the anaesthetic, I remember a few seconds
of panic and then nothing…
…When I woke up, the first time I looked at the clock I think
it was about 9pm. I was so relieved it was over and my leg was gone. The
following day, the recovery nurse came to see me and said, ‘Do you know the
first thing you said when you woke up was?’ and I replied no. She told me, ‘You
asked me if it was gone?’ I think that pretty much sums up how I felt about the
whole thing really. I spent that night in intensive care to make sure that
everything was ok and then I was moved back to my room the following morning. I
spent 6 nights in hospital, I had an epidural after the amputation for 4 days
and that was then taken out but after that the pain was so much less than I had
before from the CRPS. I had intensive physiotherapy with a lovely lady called
Jenni, trying to relearn my balance, being able to get out of bed, going up and
downstairs and being able to get up off the floor.
The first week at home was difficult, getting used to doing
more and more things for myself, having to tackle the stairs and things but I
spent a lot of the time making more Lego models, including a VW campervan which
looks amazing but too mum and I about 3 full days. 11 days after my operation I got my stump
shrinker and since then but stump has lost 3cm in circumference.
I started having regular physiotherapy and just 16 days after
my operation, I started walking on a PPAM aid (inflatable and metal
pre-prosthetic leg). It felt amazing to be upright walking for the first time
in 2 years. It was the simple things that surprised me the most at first,
immediately after I was able to put a duvet over both my legs, I was able to
shower my leg, able to sleep the whole night through without waking up and most
importantly I am PAIN FREE!
Just over 2 weeks after the operation, I was able to get
back on a handcycle and cycle about 8km. It felt so good to be going so quick
again. 3 weeks after, I was able to get in the swimming pool and start swimming
again, something I had been unable to do because of my condition for the last 4
years (since I was 15). I had always loved swimming and not being able to go
was so frustrating but when I first sat on the side with my legs dangling in
the water it just stopped any phantom tingling that I used to get. I've been going to the gym and in the next couple of weeks I hope to be getting back in my racing wheelchair too.
I have also managed to reduce quite a lot of the medication
that I was taking which has helped me overall, I am a lot less tired and more
with it.
This Monday (22nd August), I am going to the
prosthetic limb centre and I will be casted for my new prosthetic leg which I should
get about 3 weeks later.
I know amputation is not appropriate for most people with CRPS for one reason or another but I think it should be a treatment that could be paid for by the NHS in the right circumstances. My amputation has been amazing and completely got rid of my pain, I am now pain free. I also know a couple of others it has worked for. The problem is no one can tell you whether it will work for you before the operation and it is a gamble. I also know some people who have had CRPS and had amputation who still have the same CRPS pain or some pain.
I know amputation is not appropriate for most people with CRPS for one reason or another but I think it should be a treatment that could be paid for by the NHS in the right circumstances. My amputation has been amazing and completely got rid of my pain, I am now pain free. I also know a couple of others it has worked for. The problem is no one can tell you whether it will work for you before the operation and it is a gamble. I also know some people who have had CRPS and had amputation who still have the same CRPS pain or some pain.
So much has happened in the last month and to tell you every
single thing, I would be going on forever so I have tried to make it as concise
as possible. I am annoyed that the NHS refused to pay for my amputation because
they deemed it ‘not essential’ but for me, it was essential and it was the only
option I had. All I kept being told was that it might not cure the pain, which I
was aware was a risk anyway but for me it was a risk worth taking and it has
really paid off. I have freedom, I am pain free, ulcer free, infection free, my
stump has totally healed and I will be able to walk again. I cannot thank the
surgeon who did my amputation enough, without him I would still be trapped in the
horrendous cycle I was in. He has given me my life back and I am now able to do
whatever I like.