Our Legal Director Mick Laffey, from our Medical Negligence and Serious Injury Team, continues his story of spinal injury and how at the age of 19 he was diagnosed with a rare condition called AVM and had to begin using a wheelchair.
He’s been sharing his emotional journey, as well as his practical journey, in the hope that it might be of help to those just starting to manage their own life with a spinal injury.
In Mick’s penultimate blog he discusses the steps he took to try and improve his condition and some of the practicalities of using a wheelchair…
Once my back had “went” the second time I was never the same again.
I could initially hobble about without a stick but my “range” of movement was extremely limited. That is to say, how far I could actually walk.
I started using an elbow crutch which gave me support and extended my range, but I was slowly deteriorating and over time this led to me needing to use two elbow crutches. My range kept getting smaller and smaller until I could barely get around the office at work. It was worse when I was out for a drink as the effects of alcohol, and jostling crowds trying to get to the toilet, were an increasing nightmare.
Eventually, after around five years of struggling about on one and then two sticks, I started using a wheelchair again. I had always hated the thought of the wheelchair but there comes a point when the balance has tipped very much in its favour.
Frankly, without a wheelchair my range, and the distances I could usefully walk, was so low as to be hardly worthwhile. I could just about get into a building from a car parked outside. A long walk was completely impossible and it was becoming dangerous. I was so unstable and had such little balance that I was scared of falling and injuring myself all the time. Bad weather made it worse as I could not move at all on slippery surfaces such as an icy path or a tiled floor that was wet.
Over this time, I’d been back and forward to the Newcastle General Hospital loads of times. I’d been advised by a Neurosurgeon that there was nothing he could do – and I understood why.
He’d sent me to his colleague, a very well respected Neuroradiologist who had a plan. He was a bit of a whizz with a process which saw him feed a small wire into my leg then up through my body, into my spine, and down to the rogue blood vessels. The plan was to “embolize” the AVM by injecting them with a glue type substance to stop them leaking. This was somewhat experimental and very risky but, having no other option, I was happy to give it a go if he was.
I had a few of these embolization’s in the early 2000’s. It was really strange to feel a wire being fed up inside your body. I only had a local anaesthetic in my right thigh where they cut me to gain access to my venal system and I was fully awake throughout all of this. It was extremely painful when the expert was feeding the wires down inside my spinal cord. It felt like I was being stabbed in the back. It was excruciating. I gritted my teeth and told him to get on with it as I didn’t want him to stop. I was totally awake throughout all of this. The idea being that he’d ask me if I could still feel my legs until I couldn’t. It really was that blunt.
Eventually, he did what he could but although the AVM looked smaller on subsequent scans, it didn’t really make much difference. It was very much worth a go, but I admit I had hoped for better. Like anyone in my situation I was hoping for a cure – or at least a noticeable improvement.
The neuroradiologist had tried his best and I thank him for having a go as my case was very difficult. I thought the embolization process was sound however, and I looked into it further, even researching the “cyber knife” which was a new procedure of focussing a number of lasers at a certain point inside your body. Each laser was weak and would not do any damage, but a large number of them focussed on a point inside your body had, they said, the ability to burn a part away.
I also discovered a community of AVM survivors online, most of whom were American and funded by insurance policies, who talked of an expert in the University Hospital of Zurich called Professor Anton Valavanis. He was described as the best interventional neuroradiologist in the world. And he took on private cases.
I went to see my well-respected doctor in Newcastle. I asked if this guy was the real deal or if this was all just snake oil. My own neuroradiologist explained that he was indeed the main man – and that he would help in any way he could if I decided to go through with it.
I contacted Prof. Valavanis’ team and they asked for scans. My own NHS expert happily undertook some specific scans and sent them over to him.
Prof. Valavanis explained that he thought something could be done and so it was that in 2005 I found myself in Zurich with my mam and dad. We’d booked a hotel room for a week just down the road and I stopped there for the first and last night. The middle five days I spent in a room overlooking the lake and mountains in the hospital.
My colleagues at work had held a collection for me and I was delighted when they bought me a small, handheld computer console to while away the hours in hospital. I was really touched by that, even when they joked that he was going to carry out the operation in Zurich with a Swiss Army Knife. I had to laugh as the joke was on them as Prof. Valavanis is Greek and I told them he was using a spear.
Some also joked that I’d better not end up at Dignitas by mistake – as their clinic was just down the road. Black humour often creeps into medical discussions – be sure of that.
When we arrived at the hospital, the finance staff were very interested in how I would be paying. They asked for £16,000 then and there – before they’d even let me in. I gave them my credit card but it would only let them take £10,000 a day. So they took that and showed me to my room.
Later that day, as my parents and I were sitting looking from the balcony of frankly the most impressive hospital room I have ever seen, a group of white coated medical staff came down the corridor, stopping at a few rooms before finally arriving at mine.
A gaggle of doctors and nurses came into my room. Suddenly a small man came to the front and uttered the immortal line “I am Valavanis”. He explained what he’d be doing to me – which sounded similar to that which had been tried in Newcastle, and that was it.
When I woke the next morning, I was visited by the finance staff who, at the side of my bed, took the additional £6,000 fees they wanted from my card. Never ever say that the NHS is not worth protecting – as this is what you will get if it goes.
There was a leather-bound menu at the end of my bed which provided for restaurant quality meals. When I left at the end of the week I was presented with an itemised bill for my stay. I nearly fainted but suffice to say, the room was £1,000 per night, scans and tests were individually recorded, the operation was about £6,000 and each meal and cup of tea and coffee we had had was itemised and included. Every single one. It really was like staying at a posh hotel that had a side-line in medical care.
I had my operation and Prof. Valavanis said he thought it had gone well. He said that I should undergo intensive physio when I returned to the UK. When I did get back home I went to see my own doctor who looked at the scans and was impressed. He said that he thought Prof. Valavanis had done very well and arranged for the physio at a local hospital in South Shields.
I did this for a few months before stopping. I had improved a little but it wasn’t really the “Cure” I’d been hoping for. Far from it. That being said I don’t really think I have deteriorated that much since then and 18 years later I am not that much worse off. When I think about how stark and relentless my deterioration had been before then I suppose I’d take that. I certainly have not had any more of the small bleeds which flattened me for a month at a time – and that alone is worth it.
Now I use the wheelchair all the time. I only use sticks to get in and out of people’s houses and I shuffle round my car to get my wheelchair in and out of the boot by holding onto the door handles and roof. I have a technique for doing everything like this – based around what I can safely do. If you watched me getting my wheelchair out of the boot of my car you’d see the same thing every time. My hands and feet in the same place, similar movements and a set routine.
Thinking about where I’m going – and what to do when I get there is second nature now. Where will I park? What is access like? Is there an easier way?
And wheelchairs are so important. The ones you get on the NHS are (just about) adequate, but heavy and cumbersome. I find personally that I need to buy my own lightweight sports models to make it easier for me to move around. The NHS give me a small grant towards them but only every five years. So, every 5 years I get another version of the same model of chair I am used to. I always like to have at least two operational chairs at any one time. One I keep in the boot of my car for “outdoor” use and the other is left next to the space I park my car so I can jump straight in and out of that. This means I have to have a secure garage with an electric door but this system works well for me.
Finding a system of practical usage like that is very important. I also have all my old chairs – which are somewhat worse for wear now. This meant however, that I was able to make a third chair by cannibalising old parts of earlier models. It’s for emergencies only (and there are plenty of them) and, by the very nature of its existence, I call it Frankenchair. You find that anything to do with disability is expensive. It’s like when you go somewhere to book and you tell them it’s for a wedding – that bumps the price up – so it is for wheelchairs and the like. Mine costs thousands of pounds but the freedom they give me is probably worth it.
Again, that’s the point with wheelchairs. I don’t like them and I’d rather not have to use one. But I have no choice as without one I’d be stuck to a very limited distance that’s barely worth it. So I’m well past bothering about it now.
And God knows I look great in mine!?!
So that’s where I am now. I am almost totally wheelchair dependent but this really is not the end of the world. I have been able to work throughout all of this. In fact, apart from four days with Labyrinthitis around 2008 and pre-arranged trips to hospitals as mentioned earlier I have not missed a single day’s work in 29 years. Maybe it’s because I think people think I will be sickly or weak as I use a chair, or maybe I was just brought up this way, but if I’m off work – you know I am ill. You just have to get on with it. Learn techniques for getting about. Deal with the hand you have been dealt as harsh as that may sound. People are almost exclusively very kind to you – and offer to help – which is appreciated – but there’s often little more they can do than that.
Each one of these blogs has been a first draft. Every time I just sit at my computer and it all comes out. I think I’m trying to show just what it’s like and how I was feeling at the time in a way that tries to encourage newly injured people to think positively and see that there is life after an injury – no matter how profound.
To prove this, in my last blog I’ll tell you about a few of the things I’ve been up to since my injury. One of my driving forces is that I like to do things that I think people may think I’ll not be able to do (if that makes sense) – just to demonstrate my point. I have mentioned a few in passing in the blogs to date. But there are others…