A Spinal AVM is a very rare, life-changing condition. It is even rarer for it to be positioned deep within the low-end of the spinal cord, like mine is. For this Spinal AVM to occur in someone my age was almost unheard of for the surgeons who have treated me. I have had two AVMs, one from the ages of 17 to 19, and the current one was diagnosed 18 months ago when I was 22.
This is a particularly nasty, complicated condition. Due to its rarity, a brief explanation might be helpful for donors. In essence, an AVM is where an artery flows directly into a vein, rather than into capillaries and then to the vein. When this occurs in the spine, the disrupted blood flow deprives cells of oxygen causing spinal and nervous tissue to deteriorate or die. A blood clot is also produced that gradually engorges and breaks off, causing a stroke and paralysis. My current AVM, diagnosed when I was 22, is practically inoperable by ‘conventional’ surgery and will almost certainly paralyse me from the waist down unless it is removed.
My AVMs have caused massive nerve damage to my right leg, such that I can no longer run, have trouble walking anything more than roughly a quarter of a mile, cannot stand on it and I have regular ‘tingling’ and sensory deficits in my leg. The mobility difficulties arising from the nerve damage have also led to hip and knee discomfort. For someone that was a very active teenager and loves his sport, the deterioration of my mobility from the nerve damage has been especially troubling. It will get a lot worse without the surgery I need.
The story of my condition is a long and winding one. From the start of 2015 to September 2016 my mobility rapidly deteriorated. For most of this period I had no idea why this was happening to me. My first diagnosis in May 2016 introduced me to the terrible reality of AVMs. Prior to my spinal surgery in September 2016 I could barely walk or stand at all. I remember walking round the corner from my house, no more than 100 metres, before having to stop and call my parents for a lift (a benchmark I still hold my current mobility problems against today). I do not want to return to those days. When I had my first AVM removed in a 9-hour invasive operation I felt that I had a new lease of life. I started to recover and became stronger at walking and can turn it into a light jog for a short burst. The second AVM that I was diagnosed with in March 2019 has ended that recovery. The recurrence of the AVM has been particularly stressful on my family. My mum cried when I was re-diagnosed and it was incredibly stressful for me knowing that I had to relive the condition and medical procedures all over again.
Though I have learnt to live with limited mobility, my condition will get even worse and that is why I am asking for help. I was told in October 2019 by the surgeons that had previously removed an AVM from my spine that my new AVM was too deep in the spinal cord for them to remove through invasive surgery without causing massive nerve damage. It was deemed inoperable. I was told that it would continue to damage my nerves, grow and eventually bleed causing a stroke that would completely paralyse the lower half of my body. They could not say for certain when this would occur. In weeks, months or years, nobody can be certain. What is for certain is that without surgery I will eventually be paralysed from the waist down. When I was told this news I was in a daze for days and my family distraught. I have never fully come to terms with the fact that I will one day be in a wheelchair with the loss of control over all bodily functions in my lower half. Whilst my latest tests show that the AVM is stable for now, the stroke that paralyses me is coming. The longer I go without this surgery, the greater the risk.
Fortunately, there is a way out for me. After my mother, refusing to accept the diagnosis, did some research with the Butterfly AVM Charity (donate to them too if you can!), we stumbled across a new, highly advanced type of non-invasive surgery called CyberKnife (which is usually used to treat cancer). This uses highly concentrated radioactive lasers to shrink and ‘kill’ the malformed AVM in my spine. The team I have spoken to in London is confident that they can permanently remove my AVM and prevent me from ever being paralysed. I will never regain full mobility as too much damage has been done to my spinal tissue and nerves. But at the very least I will be allowed to lead a normal life.
However, this comes at a price. £20,000. Due to the rarity of my condition and the advanced nature of the surgery, it is not available on the NHS, only privately. I am not insured and I cannot afford the surgery without accumulating crippling medical debt. That is why I am asking for help to raise the money I need to pay for this surgery and allow me to lead a life that does not involve paralysis. The surgeons can operate whenever I can pay them, November at the earliest.
- Linda Fownes
- Balu Lad
- Sarah Akhtar
- Jane Twigg
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