John Jackson

Hi, my name’s John and for the last five years I have been a leaker - sounds like the sort of thing people say at support groups for well known conditions, right. . . . . .? Well, this is not.

Life before I developed a leak in my spine was action-packed. I had a young family, busy job, physical hobbies and an infectious enthusiasm for fun.

I started to notice a pain in my head every time I leant over to change my youngest daughter’s nappy; the pain was enough to drop me to my knees. This continued to worsen over the next few weeks to the point my whole body would sweat trying to endure the pain.

I made a doctors appointment, fearing a brain tumor or something similar, the GP also had the same concern! I was given a Cancer leaflet, an emergency MRI and advised to have a difficult conversation with my wife. I thought I was going to die.

I met with the Neurosurgeon the next day and, after examining me, he immediately diagnosed me with Intracranial Hypotension. I was relieved it wasn’t a brain tumor, and also relieved he knew what it was – that means I’ll be fixed, right?

In the following two and half years, various attempts to heal my leak with blood patches, glue patches and directly injecting glue into the site were made. The multi-site glue patch fixed me – although, this was so painful I nearly passed out as all my nerves were crushed. This resulted in every part of my body experiencing the maximum level of pain, from burning to crushing.

About 6 months later, the symptoms came back, but this time much worse resulting in me having to stop working. After various scans failed to find a leak I spoke to the Neuroradiologist, who has a keen interest in this condition; He mentioned patients in America who had been diagnosed with a CSF Venous Fistula – the body grows a rogue vein that siphons Cerebral Spinal Fluid. He suspected this is what could have happened in my case and re-examined the area with a more complex CT myelogram. The results confirmed his suspicions – this is exactly what my body had done.

The symptoms are slightly different – I still suffer from pain, but have also developed extreme fatigue, some long and short-term memory loss, decreased cognitive ability and, more recently, Trigeminal Neuralgia – known by the NHS as one of the most severe pains one can experience (not what I needed!). This is because my brain has sunk to the back of my skull in the lack of Cerebral Spinal Fluid and is crushing nerves.

My Neurosurgeon did the first operation of its kind in the UK on my spine, and rightly did it conservatively. He’s opening me up again in the next few weeks to potentially cut my nerve off and remove parts of my spine, hopefully for the last time, fingers crossed.

I still try to live life and pretend its not there; I do as much as I can, in fact exercise makes me feel better at the time, but immediately after I stop the pain is exponentially worse – this is due to the increase of intracranial pressure. It is frustrating at times as many people do not understand this ‘hidden’ illness, they see me trying to enjoy what I can in life, however they do not see the debilitating pain I endure in doing so. Only people close to me will see the suffering I exchange for trying to have a normal life and have witnessed the devastating impact it’s had on my career, personal life and the ability to be the dad I imagined I’d be.

I’m so grateful for the team at the RVI, if it wasn’t for them I’d still be in a bed screaming with pain.

For about six years, I dealt with a cerebrospinal fluid (CSF) leak. My journey involved various interventions, ranging from basic blood patches and multi-site glue patches to several surgeries. My leak began as a tear and eventually developed into a venous fistula. Fortunately, my venous fistula was diagnosed, located, and surgically repaired during the early days of understanding venous fistulas and leaks by the brilliant Dr. Butteriss and Mr. Nissen at the Royal Victoria Infirmary (RVI) in Newcastle, UK. The significant volume of my leak resulted in severe rebound high pressure (RHP), leading to my hospitalisation. My full recovery took approximately one year following the surgery. 

 This was back in 2018. Since my recovery, I have experienced a few lasting effects: I have some cognitive impairment, and I’m aware that I may not be as sharp as I once was, with my memory not quite as reliable. Additionally and weirdly, I can sense changes in the weather; fluctuations in barometric pressure trigger mild symptoms of high and low pressure headaches, but nothing paracetamol can’t handle. 

Despite these side effects, I am living life to the full - though many of my fellow leaker friends tell me to take it easy! However, I didn’t go through all this just to live as if I were still unwell. I am now the father I always wanted to be for my daughters, and I cannot express how much it means to be actively involved in their lives, helping them grow into the incredible individuals they are and sharing as many fun adventures as we can fit in! I can hike, climb, swim, paddleboard, power kite, ski, surf, and so much more – nothing holds me back, apart from being over 40 now and a bit more scared of things than I used to be!! 

 Interestingly though, I initially thought that the exhilaration of being well again - no longer bedbound in pain would last indefinitely. I imagined waking up each morning feeling reborn, wanting to shout out the window, “I’m alive!” However, that feeling faded after only a few months, and life returned to feeling simply “normal,” back to the daily grind of work and routine, it’s like my mind has blocked out this dark period of my life. 

“Normality is all I wished for and my wish came true”  

 But I wouldn’t have it any other way. Normality is all I wished for, and my wish came true.  

I have everything crossed for anyone still suffering from a CSF leak, and I genuinely hope to see you on the other side with the fit and well – my inbox is always open if anyone wants to chat. 

All the best, John