Today I am starting a new series of blogs about the ongoing treatment for my back. I am hoping that by sharing my story not only will people understand a little better what's going on in our life, but also maybe my story with help others in the same position as me.
had an email from a friend this week, in fact I had a number of emails
and the content was much the same. They all said "I'm really sorry
Kate, I don't think I realised how bad things were for you guys" and it
occurred to me that perhaps I haven't really let people in and let them
know what's going on in our lives as much as I should have done.
easy when you are sitting at home feeling sorry for yourself to just
think everyone should magically know how you are feeling! But of course
none of you are physic and as far as most people know I had a bit of a
fall and I have a back ache.
So where to start...at the beginning I suppose.
New Years Eve I was pottering in the garden at home, when I took a
tumble down all the terraces and landed in a heap on the floor. I
realised at once I had done something to my back as the pain was
excruciating. Charlotte was the only person at home and had the sense
to immediately call an ambulance and call our beautiful next door
neighbour friend Nikki over, who is a nurse. Poor Craig was in Robina
and got a panicked call from Charlotte to come home.
scooped me up off the ground, now an ant bitten mess and took me to
Robina hospital where I spent the next 10 days with nothing happening at
all. Complaining constantly I had done something awful to my back. I
took another fall there in the bathroom injuring myself further. At the
10 day point we asked if I was ever going to be seen by a specialist
and they admitted they didn't have one and I would need to go to one of
the other hospitals. They didn't offer to find me anyone so I was left
sticking a pin in the phone book to find a neurosurgeon or spine
was taken to Gold Coast Private hospital where I seen by a specialist
who never laid a finger on me, I had no examination whatsoever but
instead a couple of CT's. I complained constantly that I thought it was
the discs in my lower back, an injury I had had before and that I
thought I had finally finished them off. I was ignored, misdiagnosed and
given the wrong operation, a bilateral sacro iliac fusion. After the
fusion I was in a bad way but sent home to effectively get on with it. I
spent 12 weeks watching everything getting worse, now completely
dependent on crutches to get around.
finally saw the specialist again but he didn't care and further
misdiagnosed my problem as bursitis in my hips due apparently to my age
and sex. Told me I shouldn't need to be using the crutches and told me
to go home. I protested once more desperate for him to take a look at my
back as I knew this is where the pain was coming from. Except now not
only did I still have the original pain in my back, I now had a new pain
that felt like a tooth ache in my left lower side.
started physio that week and it was absolutely horrendous, the worst
pain I have ever felt in my life, equal to childbirth. I cried, I
complained, I tried to explain but no one was interested they said I
needed to work through the pain, that it was all in my head. The physio
became increasingly impossible and I became weaker and weaker. An MRI
was done and the results not given to me, so I contacted my wonderful GP
and he told me I had a possible infection and that one of the screws
from my fusion was potentially touching a nerve and he strongly
suggested we should seek a second opinion and not return to the original
second opinion came in the form of a brilliant doctor called Dr
Francois Tudor. He saw me and listened to my story, he thoroughly
examined from top to bottom, something the original surgeon never did.
At the end of the consult he told me yes I had mild bursitis and three
tears in my glutueus medius likely caused during the fusion operation.
But that this was not my most immediate problem. He confirmed my own
suspicions that the lower discs in my back had finally given up and that
this was the cause of my problems. Not being a spinal doctor he sent me
for a third opinion. He did not charge me for the consult, telling us
that medicine needed to do better and that I had been badly let down. By
now my pain meds had increased ten fold and without them I cannot deal
with the pain.
had an excellent consult with the next doctor who also asked me to see
his senior partner for a fourth opinion. They did discograms of all
three levels, which I have to say was the most painful procedure I have
ever endured. My language was horrendous and I screamed and cried like a
baby, it was truly horrible. I had an EOS scan, numerous CT's, MRI and
another test that brought tears to my eyes, a electrical nerve
conduction study to try to work out what nerves if any were involved.
test results came back and sure enough we finally had a diagnosis. I
have three collapsed discs. L5/S1 L3/4 L4/L5. The best course of action
would be a three level disc replacement however here is Australia
health funds or the government system to do not cover this procedure.
Instead all that can be done is a two level fusion and a 1 level disc
replacement. This by no means is ideal and will leave me in a pretty
poor state on top of an already fused SIJ joint which can't be undone
either. I listened to my surgeon telling me it would alleviate some of
the pain but he couldn't guarantee the outcome. He also told me that
because they fuse the spine in a standing position that when I sat down
it would feel like I was standing. I came home full of worry and I was
the most frightened I can every remember feeling. What an earth did the
future look like from here?
is now seven, nearly eight months after the fall and I have to admit to
feeling very low. The pain has increased over the last few weeks and I
am back having to use both crutches again. I sleep very little and I
am kept up most nights with excruciating pain. I can't be left alone
anymore after another fall in the shower. I can't drive or get around
on my own anymore. Trips out require scooters or wheelchairs now as I
simply can't walk any distance.
are looking into alternative operations and hope to have answers in the
next week as to whether they may be another option. But for now things
seem pretty bleak and life is difficult.
am only grateful to have such wonderful support from Craig, who does
just about everything for me, even puts me in the shower and washes my
hair bless him. He takes the kids to school, cleans the house, does the
washing and takes incredible care of me without so much as one
complaint. My girls are being good too, helping out where they can, but
I feel like half a Mum at the moment. My folks are also absolutely
amazing, and I am so grateful to them for everything they do for us and
the kids, without their support life would be much harder than it is.
for now I am just trying to retain my sanity and try to stay positive
which I couldn't do if it wasn't for the amazing people around me.
Whist we wait to find out what we do next and where that journey might