Dr Bern Hard, a GP in Wales, explains how having a CSF Leak impacted on her life and where it led her.
I am a GP living in rural Wales with my husband, who is also a GP, and our two sons who are 19 and 21, four horses, 3 dogs and a barn cat. My medical career has taken me to some of the darkest corners of society, where I have worked for decades specialising in the treatment of addictions. I am part way through a masters in applied neuroscience, driven by a desire to understand the human mind.
Life Pre-leak
I ran every day, worked 6 days per week and ran a private company, while completing my studies. I enjoyed horse riding most evenings and paddle boarded, or sea swam on weekends and practiced yoga and meditation daily.
Despite trying to ignore turning fifty, the year was not to drift by unnoticed
I encountered a stressful event that threatened key aspects of my life, I felt like my head would explode but I never in a million years believed that it literally would do exactly that.
One evening as I sat on the sofa I felt a jolt in my neck, and a strange heaviness which seemed to come from inside my skull. I got up and walked to the kitchen, and the odd feeling slowly built to something more like pain. By 6 am the pain in my head woke me. I had no intention of having my Sunday ruined by illness, so I downed co-codamol in irritation and went back to sleep. When I woke at 8 am the head felt fine. I went horse riding, forgot the headache and the next day drove to Heathrow and flew to Malta for a conference by myself.
The jolts in my neck were the first indication of the trouble ahead
The crisis in my life peaked and my mind whirred incessantly as it tried to find a solution before it literally popped. Again, the first indication was a jolt in my neck, followed by a sensation that my brain had been replaced by wet cement. This time the co-codamol had no effect, and I could not stand, eat, or think clearly. I stumbled into a chemist in the vague hope of a stronger painkiller and was soon on my knees retching into the staff toilet. This was when I discovered the relief of getting my head down low.
CT scan and bloods were normal
As I was being put in an ambulance, I was pretty sure I was dying but found myself still alive, being shoved through a CT scanner and subjected to a series of blood tests and examinations. By this point, I was convinced I had either a sub arachnoid haemorrhage or meningitis, so a normal CT and lab work was an unexpected relief.
Hum. So not dead. Tests OK, what is wrong with me? A trip to the toilet re-asserted the link with gravity, and a few clicks later Dr Google lead me to Low CSF pressure, later confirmed by a LP with a very low opening pressure. My unexpected Maltese adventure stretched to a month, three MRI’s bilateral sub-dural haematomas and a thrilling trip home in a private jet ‘air ambulance’.
By now my sagging brain had adjusted to its new situation
Agony had subsided into a constant ache accompanied by an array of fun symptoms: orchestral tinnitus from pulsing to clunking, a sensation of being in a metal box under water, pins and needles across my face, occasional double vision, a strange metallic tingling in my tongue and a whole range of neck, back and limb aches which came and went. The most debilitating symptom from the CSF leak was the cognitive fog that descended over my mind which felt unplugged from the machinery required to articulate thoughts.
Years of work at the sharp end of what happens when the brain is bathed in opioids alerted me to the pitfalls of seeking a pill to kill the pain, and I focused on non-dual meditation techniques to distance myself from the symptoms.
Pressure changes- the highs and lows
My brain soon worked out what makes things better and what makes them worse. I had become a human barometer, low atmospheric pressure seemed to add weight to the cement in the skull. Hormonal fluctuations also impacted, with progesterone seeming to aggravate the situation, and my un-cushioned brain objected to the accelerating forces of moving vehicles like eggs in a shopping basket on a bumpy lane. Lying flat, good hydration and moderate amounts of caffeine served in buckets of matcha green tea provide brief reprieve. I found, lying down in a liberal tolerant inclusive society, is a bridge too far and those who dare to try it are likely to be viewed with variable degrees of distain, suspicion, or alarm.
Does it help or hinder to be a medical professional and a patient?
After being delivered to my front door by private ambulance, I was slammed into the reality of the National Health Service. Having a ‘foot in each camp’ as a healthcare professional, who finds herself on the ‘other side’ insight is a double-edged sword. Whilst it has certainly provided me with inside information that has allowed me to navigate the system like a black ops insurgent, sometimes a bit of blissful ignorance would have been a comfort. As autumn turned to a wet cold dark Welsh winter around me, hope took a real battering. I felt trapped. My head throbbed and my thoughts were encased in the wet cement. I had no income, and my critical illness policy deemed my subdural haematoma not the right type.
The mental health impact is huge
My feelings swirled from despair to guilt at letting my family down and being a burden. At worst I wished I had not survived. These dark thoughts served as a wake-up call. I needed to rescue myself from this pit. What gave me a toe hold to start the assent was the CSF leak UK website. I sold my car and determined to prioritise a diagnosis and management plan at a CSF leak expert centre.
A way through to recovery
As I watched winter give way to spring, and warm into summer, with thanks to a CSF leak specialist team in London, I had achieved a clear diagnosis of a ventral dural defect at T11 and Welsh Health Shared Services had agreed to fund the operation to surgically repair the dural hole, in NHNN London, under the care of Mr Sayal, the clinical lead for complex spinal neurosurgery, and a renowned expert in surgical management of CSF leaks.
Surgery -a daunting experience
My surgery took place in August 2023. It was a daunting experience, travelling to London to undergo such major surgery. The operation involved a laminectomy, removing a small bony window over my spinal cord, and then manoeuvring around the cord to access and seal the defect. It all went well, and my dural tear was clipped. I had symptoms of high Intracranial pressure within 2 days of the surgery, which was horiffic but thankfully short-lived. My brain was re-floating and did not take kindly to the sudden change in environment. Loud pulsatile whooshing tinnitus quickly progressed to a blinding headache, nausea, photophobia and phonophonia. Once these awful symptoms settled, I was able to start slowly mobilising. I left hospital in 10 days, and returned to Wales on the train!
Relief from symptoms
My recovery from this point on was straightforward, and within a few weeks I was walking up to two miles ( slowly!) and back to fairly normal activity within six weeks. A three month MRI Brain showed a normal scan. No more brain sag. As all my symptoms of low pressure had resolved, I had achieved both symptomatic and radiological cure at this stage.
Normal activities have been resumed
It is now over a year since I underwent this ordeal, and (touch wood) I am healthier than I was before this happened. I go to the gym most days, enjoy riding and jumping my horse, and playing with the dogs. I have made a few modifications such as avoiding heavy lifting and impact such as running as I have a healthy respect for my spine which has been through a lot- but I feel that core strength, mobility and cardio fitness are super important for general wellbeing. My CSF leak team agree this is a sensible plan.
The CSF Leak Association -our goals
I am enjoying my role as a trustee for the CSF Leak Association, in particular with a focus on what I might be able to do locally to help Welsh patients. We need a Welsh CSF leak patient pathway, that is consistent with the consensus guidelines, and commissioned and adequately resourced. It is not fair that patients who are so unwell have to try themselves to find a route through the services to the correct treatment.
The lessons have been huge
My CSF leak journey has been tough, but so far I am aware I am luckier than many who have struggled for longer. Along the way, I have learned a huge amount about health, and disability that I never picked up in thirty years of practicing medicine. I have also met some wonderful people, and made some lovely friends.
With grateful thanks
I am eternally grateful to all the healthcare professionals who played a part in helping me get better. My own GP did not know about this condition, but he has been a total rock, supporting me at every stage of my journey, and advocating for me. My CSF leak team in London are awesome: dedicated, highly skiiled and also kind and understanding. My family and friends have also been a support beyond my wildest dreams. I am truly blessed to know you all.
Fundraising: My wingwalk for the CSF Leak association charity
I intend to celebrate my repaired ability to be upright by standing on the wing of an aeroplane ( weather permitting). My sponsored wingwalk is to raise money for the CSF leak association, and to raise awareness of CSF leak conditions. (Editor's note: this is pending favourable weather conditions. Follow on Just Giving for updates).
Dr Bern Hard
Trustee of the CSF Leak Association UK
GPwER in Addiction
South Wales
