Wesley's Life Saving Surgery Fund

Hi, I'm Wes, and I have CCI/AAI, which makes my upper neck dangerously unstable and causes me severe pain. It also causes a range of other disabling symptoms: from problems with my vision to mental confusion to numbness in my face and arms and overwhelming fatigue. My life has been seriously limited by this since I was 16 years old and it is getting worse all the time. Now at 32, I have the chance of neck fusion surgery which could change my life and ultimately even save it! But the problem is the nearest place I can get this specialist operation is in Barcelona and it's going to cost £60,000. This is a huge sum of money for me and my family to try to find and so we need every bit of help we can get to raise it. Without surgery the future looks bleak. Can you help me?

If you'd like to know more about my story please read on for the long version:

When I was 16 and still at school, I became unwell with a mysterious illness and have remained ill ever since. Although you may not have known this if you knew me during the early years of my illness because of my reluctance to share what I was experiencing and my determined efforts to appear “normal” in front of other people. Before this I had been a fit and healthy guy. I had lots of friends and enjoyed taking part in sports. But my health has been getting steadily worse since the onset of this illness and with every year that passes I become more disabled. I have severe neck pain and headaches, restricted mobility in my neck, problems with my vision that mean I can't use a computer or look at the screen of a mobile phone. I also have difficulty looking at patterns, for example, polka dots affect me particularly badly. I get exhausted very quickly and it takes a long time to get some energy back. I suffer from intermittent numbness on the left side of my upper body, confusion and dizziness. On several occasions, my symptoms have been so extreme and stroke-like that it has been quite terrifying. I've sometimes had high temperatures for no apparent reason too. I have been unable to work at all since 2011 and before then my attempts to keep up with even part time jobs repeatedly proved unsustainable.

This illness has made me miserable, isolated and hopeless. It has been almost impossible to retain friendships and socialise like most people do. This has badly affected my mental health.

However in 2019 with the help of my wife, Lucy, we made a breakthrough. Desperate to find answers to the cause of my illness Lucy was trawling the internet for anything that could shed any light on my predicament. I have seen dozens of doctors and specialists in the UK over the last 16 years and have had so many futile consultations, scans and tests that I've lost track. But through following the progress of the higher profile case of ME sufferer and campaigner Jennifer Brea, Lucy found a blog by a man named Jeff Wood over in the U.S. He had been experiencing many of the same symptoms that I had. After also having no luck getting to the bottom of his illness via his GP or while in hospital, he managed to find information about a condition called Craniocervical and Atlantoaxial Instability (CCI/AAI). CCI/AAI is characterised by precisely the symptoms I had been experiencing! Anyway, Jeff was able to find one of the few surgeons in the world able to perform surgery to fix this condition. Having researched the condition thoroughly, he also posted the very short list of other expert surgeons that could accurately diagnose it and perform the surgery. Unfortunately there is currently none in the UK, but there is one in Spain. With my condition worsening I thought it worth contacting the Spanish surgeon, Dr Vicenç Gilete. I was told that I would need an upright MRI or CT scan fully extending my neck in all directions. Doctors in the UK had sent me for MRI scans in the past, but they were always done horizontally (laying down), which is apparently no good for diagnosing this condition. I flew to Barcelona with my Mum and did the required scans, which were such a struggle due to the amount I had to move my painful neck in order to try and diagnose the illness. After a very anxious wait while my surgeon viewed the results of the scan, I was called in. After 16 years of despair, worry and confusion I was finally told what was wrong with me. The relief was immense! My diagnosis was confirmed as craniocervical and atlantoaxial instability, just like the guy we read about on the Internet.

So, what is CCI/AAI? It is caused by loose ligaments in the craniocervical junction, which is where your skull meets the top of your spine. The problem these loose ligaments cause is that my skull is not being properly supported and is sinking into my spinal cord. This is causing my brainstem to become squashed. These are clearly very bad things for my health and will keep getting worse if left untreated, eventually leading to fatal consequences.

Now I come to the reason this fundraising page has been created. The only way to have any chance of putting this right, stopping the progression of the illness and protecting my life is to have the surgery. It will mean fusing my neck from the skull to the second vertebra. This will stabilise my neck and also lift my skull upwards meaning it should no longer compress my brainstem. It is a major surgery with some hefty risk involved, due to the proximity to the vertebral artery. Hardware failure, infection and also death are possible. Even if all goes well, there is a lengthy recovery period. The surgery will cost £60,000 and despite ongoing attempts to get NHS help with funding this operation, their lack of understanding of the condition is meaning they are reluctant to contribute to the cost. From what I know of the other people in the UK with this condition that have had the surgery, many get no funding at all and, at best, any contribution from the NHS that has been won was a small fraction of the total sum and did not materialise until many months after the event. I am, therefore, asking for your help to fund this life-saving surgery. Anything you can give is hugely appreciated. It gives me a chance to get a better quality of life back and also gives my family the chance to get me back in their lives in a healthy state. Two years ago, despite the obvious difficulties, I became a Dad. My daughter is too young to understand anything about my problems and I desperately want to be the best Dad I can be; to be actively involved in her life and to live to see her grow up.

Thank you for taking the time to read this.

Wesley Bell