My brief intro!
I am a 27 year old biological scientist in London with two amputated limbs following a train accident. Currently things are not good, but a surgical procedure can offer life-altering changes, so I am currently pursuing it.
In latest news, Ministry of Defence (MoD) is spending £2m on trials that will begin next year and involve 20 military amputees who will have a procedure known as direct skeletal fixation, or osseointegration. This surgery is the best and latest technology, and so the military are trialling it first in order to do the best for their service men and women. It's not available on the NHS.
The technique does away with the need for traditional prosthetics, as a titanium implant is fitted directly into the bone and an artificial leg connected to it. It is a significant departure from the current approach, used for hundreds of years, of fitting a socket on to a stump (see one patient's video here).
I've not served in the military, and regardless there is uncertainty in which service men and women will gain access to a trial. In recent news a service man deemed it worth the personal cost to fund it himself - these implants can be life-defining.
I would like to begin the effort to fundraise towards a goal of osseointegration for both limbs I lost in an accident in May 2012.
About my accident:
I fell under a docklands light railway (DLR) train as it pulled into the platform at West Silvertown in London. I have no memory of the incident, although the CCTV footage reveals it being an accident of chance and error, where I was just mistakenly walking too close to the platform edge as a train arrived.
I lost my left foot at the scene (it was never found) and a couple of hours after arrival at hospital surgeons were forced to remove the remnants of my left arm in order to save my life. Almost two weeks were spent in medically induced coma to stabilise me. Surgeons at the Royal London Hospital undertook multiple debridement surgeries on my left stump to clear dirt and infection picked up from the train tracks. My left arm has been amputated to just below my left shoulder.
After three years of pushing and trying, I have realised the limitations of the hundred year old solutions which due to budget, are the limit of what UK public health services can provide.
- My Leg:
My current leg is donned using a cup shaped socket, and multiple layers of silicones and fabrics in order for the leg socket to grip onto my skin, and keep the foot on. It is 'suspended' on.
Sometimes it fits quite tightly, but most of the time I can describe it as walking inside a kind of wobbly shell with a foot on the end. One problem here is uncertainty of where my foot is and where it is moving to... or even if it is on the next step or not (for example). The thing is not linked to my skeleton, it is mounted to my skin. My skin therefore is taking almost my total bodyweight in some scenarios, skin which is pulled over bone and nerves that have undergone significant trauma and continue to cause pain.
Osseointegration (OI), otherwise known as direct skeletal fixation, solves these problems and more (which you'll find further on).
OI is modern, and not based on decades even hundreds of years old technology. This procedure would implant my bones with titanium implants which allow me to bolt on an artificial limb in seconds, with potentially zero discomfort once healed.
OI provides me with the ability to bear weight through my skeleton as nature intended. OI would allow accurate control and placement of my foot, by being linked firmly to my bones instead of clinging on my skin. OI would stop wear and pressure sores on my skin from traditional cup sockets. OI would allow me to wear a leg in hot weather and during exercise where the socket usually fills with sweat and loses suction (comes off).
Integration to bone rather than gripping onto your skin also allows for something called osseoperception:
"The patient regains the ability to feel the ground and can differentiate between different surfaces such as carpet, grass, tiles and uneven ground which also allows for movement in unfamiliar areas in dim light."
- My Arm:
My arm is currently almost useless for someone in my personal situation. With hardly any 'humerus' bone, below my shoulder, I am unable to direct prostheses and use hands in a realistically helpful way. I can use my shoulders and torso to power a hook to open and close around things, when wearing a bulky harness, but I can't raise the item, turn the item or direct it in any way except by walking my whole body around.
Tapping into my bone here would mean that I have more options open to me in the future. What is critical is that I get it done as soon as possible to get the most stable healing around the titanium implant.
Bolting onto my bone below my shoulder means that I could potentially exact enough force to lift objects over my head and to the side without moving anything else! There is literally no other way this possible. The skeleton is natures way of enacting force. Any arm which I wear at the moment uses my shoulder only as a harness attachment point. What I am given by the NHS I wouldn't call a true limb, it is a gripper mounted where the shape of an arm used to be. I hope to provide some videos of this in the future.
Having an implant at my residual arm means that I have a universal metal adapter to my skeleton which I can attach any brand of electronic elbow, wrist, and hand to, in the future. I currently am not fundraising to explore these things because I'm just so anxious about getting the implant in place, but if this campaign went well I would love to have a stretch goal of purchasing the necessary bionic attachments for the new implant in order to create something almost as good as a human arm.
In the video below you can see a man who has had osseointegration in his upper arm. Despite the pricetag on this research arm, it just shows you how integrating to the skeleton means no harness or straps, no painful rubbing, and he is able to point it around with his own skeletal system. It's worth noting before watching the video that the pricetag is due to it being a DARPA research project. So, video for demonstration of an arm implant only...
Dr Munjed Al Muderis loosely estimated* a cost of £90,000 to osseointegrate two limb implants, including:
- Hospital Stay in Sydney, Australia
- Hospital Services (Anaesthesia etc.)
- Surgerical Theatre & Team
- Custom Implants
*Dr Al Muderis is awaiting my CT scans from the NHS before he can make accurate cost predictions.
Additionally I need to fundraise:
- Economy flights out to Australia
- Business class or extra leg room (preferably extending bed) return flights home to United Kingdom
- a recommended 3-6 weeks nearby wheelchair accessible accommodation in Sydney, Australia
The above is needed for myself, but also for one (hopefully more) support persons of family or friend as available at time of surgery for assistance.
I am seeking help from any who are willing to add to the pot to set me up for greater healthier things. Thank you.
The younger and healthier I am, the more successful and long-lasting the implants will be. As I am 25 it is medically recommended that I complete osseointegration surgery as soon as I can.
As you grow older your body becomes slower and less able to heal itself, especially with bones. Your cells break down bone but have a reduced ability to lay down fresh and strong material. In bad cases this can be called osteoporosis which you may have heard of.
More about this campaign:
I have spent 3.5 years being a strong as I can, with the support of a very awesome family and a bunch of astonishingly kind friends. I appreciate them so much.
But as much as they imbue me with strength, losing limbs doesn't just mean a bit of your body is gone. You are constantly second-guessing how far you can walk what you can do and for how long. My life is controlled by planning around the limbs.
Part of what attracts me to osseointegration, apart from all of the amazing improvements already listed, is what it would mean for me mentally.
Sitting on the sofa and seeing that you need to take the bins out, there's a an additional obstacle between the task being complete and now. I've got a think: how is my leg now? Am I going to struggle to do this if I stay in my wheelchair? Should I just try drag the trash on the floor outdoors with my wheelchair, kick the heavy glass doors open at bottom of the apartment block, and try and tug my wheelchair through. Or, do I just go and get my leg.
Where is my leg, is often the first step (haha). How many socks do I need, because is my leg is inflamed or shrunk in size? Is it sore, can I even put this on now? What if I have some walking to do tomorrow that I want to recover for.
Say I've found my leg now, the next step is to grab the silicone liner and to roll it up over my skin. This is a thick silicone gel with fabric on one side, for me it takes some time to put on physically because of its weight and my having one hand, not a long time, but some. It's just what you could call a micro-obstacle psychologically. After that I need to find socks, these are just fabric layers which go on top of that liner in order to compensate for volume changes of my flesh. If I've been walking already that day they are going to be smelly and potentially wet from sweat, which can be unappetising (so always keep a good supply of socks around - a life tip for most two-legged people too!). After these socks are applied, my record is seven additional socks on top of the silicon liner so far, you then apply a thin nylon layer which is to help manipulate this now ginormous marshmallow to fit into a plastic socket (and carbon fibre if you're lucky). The step after this... Well basically the point is that each step is just something which psychologically pushes me away from doing tasks that require me to walk. This pushing away from walking isn't healthy for human body, I do know that and I do my best to keep fit and I do this by budgeting with leg-on-time.
But for completeness, that next step, you would then roll on an additional silicon layer which is what grips your skin and also grips the socket and keeps it in place suspended on the end of your residual limb. As you might imagine by now it's a rather warm place to put your body in, and get sweaty and smelly and requires cleaning work every day.
Imagine now, that I've got my leg on. I take my rubbish out from the bin, past the broken lift in my apartment block and get it down from my flat on the 7th floor. I'm not going to want to do this, well for starters not many people want to do this, but we do. There are micro-ostacles and variables to consider before putting on a socket based prosthetic leg. They add up... You take the bins down and you get back up to your flat and you've got an uncomfortable object attached by your sweating sore skin, tugging at you. You get it off of you at the earliest opportunity, only to notice there are no new bin bags. It would be really nice to 'run to the shop', but you're already a musty legless man on a sofa.
It's not nice to admit in public, but obviously, this is reality and has happened. My flat has filled up with rubbish from ready meals and crumbs because I don't have a bin bag... This is only the simplest example I can think of but the psychological barriers apply across all activities of life.
I don't claim to be a saint of cleanliness, and those who know me will understand that I'm definitely a 25-year-old boy... But I do recognise, and most amputees do, that some days you just won't even go out because you can't face that obstacle today, or you are worrying, budgeting a bit too much.
It's a constant measuring game and also a game of fear, or if not fear, it is at least an uncertainty.
Osseointegration, it literally gets rid of most of that, it creates a psychological freedom where you don't have to worry about how much things are going to hurt and how far you can take things. It would be great if I could say it gets rid of 'all of it' but I've heard that people don't wear their metal limbs 24/7 because you end up damaging yourself or your partner at night. They're not comfortable against your other body parts (but this is a problem which exists with most all prosthetics - I hurt myself on my metal leg all the time...).
Osseointegration, the titanium implant, means that the steps for attaching my limbs are as follows:
- attach the limb...
...then I can walk away.
It's the right height because it's just the right amount of metal attached to my bone, it doesn't fluctuate like my fleshy bits used to. There are no liners, no layers. All I need to do is make sure I don't attach my foot pointing the wrong direction!
For this campaign I was trying to find a couple of prescient photos, and searching through my photo albums I found loads of times where my body was keeping me from doing what I wanted. For example, there was this holiday with a group of my friends, we stayed in Spain in a few locations, but every time I was a limiting factor. They are lovely guys and wouldn't let me feel bad about it but there's no escaping the fact that I was holding back the group. Walking around Barcelona something that I was just not able to do, and I had to use a wheelchair the entire time. I was unable to ascent different monuments and pathways, and stop one of them from running off and having fun because of pushing my wheelchair. It frustrated me.
There were days in that holiday where I therefore tried to walk it on my leg, but I just couldn't risk going for a long trip without wheels being there waiting. The guys would help me push the wheelchair along empty because I knew once we got to the destination I wouldn't be able to walk back, and I did need it. You can imagine the problems just dragging a wheelchair around a busy pub, or on public transport, even taxis.
Imagine if I could have no discomfort or limit to my range of walking... With osseointegration, patients report that the first factor to restrict their walking is pain in their knees because they have not used it properly for so long. It even helps build up your muscles slightly, where they have atrophied and wasted away because you're using your skeleton and muscle groups more correctly. I love life and really would like to reduce the impact of my injuries as much as can be done with modern medicine, I'm not a person to sit in sorrow, I have lots yet to do.
- Elizabeth Johnson
- Gerard van der Molen
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