Friday, 9 August 2019

The Truth Behind My Back

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.

I 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.

It's 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.  

On 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.

They 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 specialist.

I 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.  

I 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.

I 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 surgeon.

The 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.

I 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.

The 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?

It 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.

We 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.  

I 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.

So 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 take us. 

Kate x

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