Wednesday, 28 August 2019

The Big Operation

Many people have asked me, "What exactly are you having done? What does the operation involve?"  so, I thought I would do my best to explain what I am actually having done and what we hope the outcome will be.

Before I get started please remember you can help make these operations possible for me by visiting our Go Fund Me Page

My warning today is this blog is fairly graphic, there is not really a way of getting around be warned! 

Firstly I have two different problems.  The first problem is that 3 discs in my lower back L3/4 L4/5 L5/S1 are kaput for want of a better word.  The second problem is that I have had an Sacro Iliac Joint bilateral joint fusion that I didn't need, plus it has been done incorrectly with one of the screws pressing on a nerve.  

Let's deal with the three level disc replacement first up.  I am one of those people who face things better when I know what is going to happen to me, so last week Craig and I got the popcorn in and sat down to watch multiple video real life surgeries of a three level disc replacement.  It is quite confronting but in equal parts amazing.  



For the disc replacement component of my surgery it will take around 3 to 4 hours under a general anesthetic.  They start by making an incision in my abdomen, (yes I know weird right? They go through the front!)  Then they carefully cut through the layers of fat (of which there are a few!) cauterising as they go to stop any bleeding.  They cut through the fascia and go around the rectus muscle and retract it without damaging it.  They create a 'window' to my spine by clamping everything out of the way including muscles, perinatal sack and blood vessels. Then they hammer hooks into the spine itself to create a stable environment to work in.

With the window created, my surgeon can now see my spine. He now starts to remove the crappy disc with what looks like a large pair of tweezers!  The disc itself looks a bit like a scallop or chicken meat.  It is important that all of the disc is removed and no bits are left.  A really clean surface is needed for the new disc to have the best chance of success. They now measure the space and decide which type of disc they are going to use. Next they basically jack up the space between the spine to make sure they have a good space for the new artificial disc,  I believe they are using ESP discs for me.  

They have told me I could gain up to 3cm of height!!  I might end up taller than my daughter Charlotte once more, now that would really annoy her! They then carry on and do the other two levels. They constantly use a CT/Xray to make sure they are placing the discs correctly. Then they to put it simply they un-clamp everything and sew me up.

For those who are not squeamish watch the video below.  This is one of many that Craig and I have sat through.  It is absolutely incredible and so interesting.  I think watching the videos will help me to understand how I am feeling after, understanding why I hurt or where I hurt in certain places.  I might be alone in this thinking however!! I think many people couldn't think of anything worse than actually seeing what they are going to do!


Next up will be the revision of the Sacro Iliac Fusion. At the current time of writing this I have a non-union which basically means it has not fused as it should have done, plus there is a screw pressing on a nerve.  

If this is still the case when I arrive in Zurich the surgeon will be able to do a revision surgery.  For this part of the operation they will turn me over onto my stomach (ouch) and the surgeon will need to make four incisions into my butt cheeks.  Under CT he will need to find the rialto screws and with what looks like Craig's electric screwdriver, undo the screws and take them out. 

At the moment I don't know whether they will have to replace the screws with another system, it depends how well the joint stands up to the procedure.  In many ways the revision surgery holds far more risks than the disc replacement.  This for me is the scarier of the two operations I think, because there is such an element of the unknown about it.  Not many surgeons will agree to doing this surgery and it does carry risks.  However the pain of that screw outweighs all the risks, it's like having a massive tooth abscess pain in my hip 24/7.

If it wasn't such a waste of my energy I would be angry about the SIJ revision as the original bilateral SIJ fusion operation should never have been done in the first place and that is something I have had a great deal of problems trying to come to terms with.  My biggest piece of advice to anyone going through any back or SIJ problems or indeed any medical problem, is do your own homework and don't be bullied into any kind of treatment and always, always get more than one opinion, in fact get two or three. 

The other thing that is really important is to exhaust absolutely every other option.  Do the physio, try pilates, go swimming, take your pain meds, try chiro, healing, try everything!  Because once you start on this road of surgery it's a big deal and isn't always a great outcome as I have found out.  Avoid surgery till you have no alternative left to you, it really is the very last resort.

I try to take comfort in the fact that the artificial discs I already have in my neck at C5/6 C6/7 were the best decision of my life.  All the pain went away and my life was restored to normal. I desperately hope I will have a similar outcome from this surgery and that life can finally get back to normal.  I miss be able to have fun with my kids, they Mum really is currently missing in action.

I am absolutely terrified of what's in front of me, I would be lying big time if I said I wasn't but I know it's the right decision for me.  My life has become so difficult and my reliance on others has become total.  Even the simplest tasks require me to ask for help.  I miss little things like driving, being able to pick my Mum up and go off for the day.  Don't get me wrong Craig is amazing and takes me everywhere and never ever complains, he is incredibly patient but I miss my independence.

At the end of the day I have reached that point where I don't see I have a choice.  It is time to be brave, take a breath and fix the problem and get on with my life.

I should be in hospital for a little over a week.  Then I move onto a rehabilitation program in Switzerland and then on to Dusseldorf in Germany to a specialist unit, but I will tell you all about that in the next blog!

Thanks for listening hopefully I didn't gross you out too much! 

Kate x

Tuesday, 27 August 2019

We got Married!

It's been a fairly traumatic month here in the Armon and Smith household.  After going backwards and forwards to specialists here in Australia, they finally decided two things, firstly that they could do nothing to fix the screw that is pushing on a nerve after the botched SIJ fusion and secondly the only solution they could offer for my debilitating back pain was a further fusion, leaving me for want of a better word, disabled for the rest of my life.

At first, we didn't know what to do, the thought of having to live with this pain forever was simply not an option.  But we didn't seem to have any other options.  Until it was suggested we approach an amazing Doctor in Zurich, a Professor Dr Rishcke.  So, without any expectations we wrote off to him.  We spent the next two weeks emailing, skyping, sending reports, we even took a day trip to Melbourne to get a standing MRI, something you can't get here in Queensland yet.

We finally heard from Dr Rischke that not only could he do a three-level disc replacement saving me from further aggressive fusion surgery but he believes he can also revise the SIJ fusion and restore my lost movement.  Hopefully leaving me pretty much pain free into the process and mobile once more, effectively giving me back my life.

What happened next, well you might describe it as a bit of a whirlwind, and it's happened so quickly my feet have barely touched the floor.  Lying in bed two weeks ago just falling asleep, Craig whispers to me "I want us to get married before you have the operation" at which point we both of course get far too over emotional!  We turn the light back on, sit up and talk until the early hours of the morning.  He is right of course, he is right about most things actually but I try not to tell him that, he might get a big head.

Traveling for such a big operation as husband and wife, well it makes more sense.  If Craig has to make consent decisions, well it has all sorts of ramifications, it simply makes more sense. We start talking about the plans we had for a big wedding next year, with all of our friends and family present. And in that moment, we made a choice, as much as we wanted everyone there to help us celebrate, we wanted to be married before we go even more.
My Hen's night with my two girls

We decided to hold a very small ceremony at home in our living room for just us and our close family.  But could we pull off anything with just two weeks to plan and no money to do it?

Have you ever noticed that when something is completely the right decision everything just happens as it's supposed to?  That's exactly what this has been like, everything just fell into place.  

We rang Mum and Dad and they were amazing, loving, supportive and completely understood where we were coming from and immediately asked "How can we help?".  

Next, we phoned Amy because we always knew we wanted her to take the ceremony, I think she thought we were joking but soon stopped laughing and started writing  when she realised we weren't and cancelled any plans she had. Next, we needed an actual celebrant so we phoned my celebrant friend Matthew who I did my course to become a celebrant with and who had already done our NOIM for us some months before, he kindly to do the official paperwork for us on the night. Our next door neighbour on one side made us a beautiful cake as a gift and our next door neighbour the other side who is a beautiful photographer offered us photographs and decorations for the house. My only sadness is that we were not able to invite all our wonderful friends and family to join us.

To cut a long story short on Saturday night in a very small, low key but beautiful, romantic ceremony I married the love of my life and apart from having missing many friends and family it was perfect.  At 5.15pm we turned on the twinkly lights and candles and under a simple arch in our living room our best friend married us. I came down the 'aisle' to Ben Fold's 'Luckiest' the words seemed so appropriate, do you know it?

I don't get many things right the first time,
In fact, I am told that a lot
Now I know all the wrong turns the stumbles,
And falls brought me here
And where was I before the day
That I first saw your lovely face,
Now I see it every day
And I know
That I am, I am, I am, the luckiest

Craig's vows were absolutely beautiful, and really all I wanted to say when he had finished was "What he said, only more" (which of course I did!) He took my breath away, no one in my life has ever said anything so beautiful or heartfelt to me as he did. But then that’s Craig, I don’t think a day goes by that he doesn’t make me feel like the most loved and special woman on the planet. When it was my turn to speak, I suddenly felt like there was nothing I could say that would even come close to either how I felt about this man or that would come close to what he had just said to me. I proceeded to trip over my words and get far too emotional as I tried, not so eloquently to tell him he was my one, my soulmate, the absolute love of my life.

Now, as I sit here on a Sunday afternoon next to sleeping husband, I can’t believe we are so lucky to have found each other.  It’s not often in life you get a second or even third chance at happiness and that’s exactly what life has given us. I get another chance at happiness with a man whom I absolutely adore. He is a wonderful Dad to not only his boys but to Charlotte and Rosie and they love him just as much as I do, but more than that he is the love of my life and I feel incredibly privileged to spend forever with him by my side.

I hope that our friends will understand why we did this quickly, quietly and without a fuss and I hope they will all join us on when we get back from our overseas trip and I am recovered. Because we are going to throw a big party, because we have saved our first dance for that day and we hope all our wonderful friends and family who I know would like to have been there with us to celebrate such an important occasion will join us then instead. 

As many of you will know we are crowdfunding to make my trip to Switzerland possible. We leave on October 5th and probably won't be back until the middle of November. We have been completely overwhelmed by the response from our family, friends and by complete strangers.  Thank you to all those have given so generously and for sharing our post far and wide, I simply can't thank you enough.  Thank you to all those who have offered to support and look after the girls whilst we are away.  They are mostly staying with Mum and Dad but it is wonderful to know they will have such support whilst we are gone.


Signing off Mrs Smith. x

Sunday, 25 August 2019

We need your help



It's been a tough month since my last post, with so much information that at times it has felt completely overwhelming.  My back has continued to worsen and surgeons here have been left scratching their heads as to what to do.


What I really need is a three level disc replacement and a revision surgery of the SIJ operation that was done back in January that went horribly wrong.  However, surgeons here simply don't do it, it's not covered by health funds so it's not available.  Leaving me disabled with no fix and no hope of anything improving.  

The only thing surgeons here can do is a further fusion, but with the fusion in my SIJ already this is a very bad idea as I would lose too much movement in my spine and not be any better off than I am now. It was suggested to us that we look to Europe where disc replacements are commonplace and have been done for over 30 years.

We started looking abroad and managed to get an appointment with one of the worlds leading surgeons Dr Rischke in Switzerland.  After much back and forth he has confirmed I am a good candidate for the three level disc replacement plus he hopes to be able to reverse the SIJ fusion done in January.  The latter we won't know until we are in Switzerland.  He will need to do a CT to confirm there is still no union between the bones. If that is the case he will be able to remove the screws, at the very least he should be able to shorten the screw that is currently digging into a nerve, which hurts like hell. 

So, what does this all mean?  Well in early October Craig and I will head to Zurich for what will certainly be the scariest adventure to date.  We will be gone we hope no longer than five weeks barring no complications or other problems.  I will spend one week in hospital before moving into rehabilitation for the remaining weeks.  We will then travel back to Australia.


However, as you can imagine all this comes at a huge financial cost.  The cost of the two operations, plus travel, accommodation and everything else comes to around $140,000 which honestly makes me feel a bit sick.

My parents have offered to help us as much as they can, plus we have had very generous offers of help from other members of my family but we are still way off what we need to make the trip and operation possible. My sister and my niece suggested we set up a 'Go Fund me page'.  I will be honest I wanted to crawl into a hole and hide rather than ask anyone for help.  But this isn't just about me anymore it's also about the girls having a Mum that isn't completely useless to them growing up. I have felt utterly useless to them for months now and it's the worst feeling in the world.  There is so many things I can't do with them anymore and this operation would give me my life back and give them their Mum back.

I am a proud person and asking for help of any kind is not something I have ever been very good at, let alone asking my friends, family and people I don't know to donate money. Especially when there are so many worthier causes than mine out there.  I am completely mortified by the idea but as the weeks have gone by and I have had a chance to think about my future I realise that without this operation I am completely stuffed.  A number of you suggested I set up a fund me page so I am taking your advice.  Because it's not just about me, it's about my family too.  This operation offers me the best possible outcome but without your help it won't be possible. 

Anything you are able to give whether it's one dollar or a million (I'm hoping!!) will be gratefully received.  I know you are all mostly in the same boat as us and live from one week to the next, so please don't feel obliged or pressured. If you are able to give something to help well that's just wonderful if not that's okay too.  

The other thing you can do to help is to share my page far and wide and hope that some insanely rich person with more money than sense will see our story and think 'I would like to help them'.  

Upon our return to Australia my poor Craig will also be facing back surgery.  It's going to be a long road ahead for my family but with a little help from our friends it may be just a little bit easier.

Thanks so much to you all for everything, whether that's an email checking up on me, a text, a phone call or a donation, everything you all do is so appreciated.  I feel very lucky to have so many people supporting us.

Kate x

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 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