I am a Mum to two young boys, aged eleven and seven and having danced all my life, have always been a very fit and active person.
In May 2014, with my sons aged seven and three, I was hit in the face in a freak accident and apart from the black eye and a lump on my eyebrow which lasted about a year, I didn’t think anything of it. Doctors have always maintained that this accident had nothing to do with my leak due to the timings, but as I now know that cranial leaks can start with a head injury, I can’t ignore the coincidence.
By July 2014, I had a stiff neck and could not move my head to the right at all. I put this down to our chaotic sleeping arrangements dealing with a toddler who never slept. I had the stiff neck as a symptom for about two years in total.
In September 2014, the headaches started. They weren’t “normal” headaches, more a feeling of “interior skull pressure”, concentrated on the back and sides of my head. Like a feeling my skull was being crushed at the sides or my head was being pulled backwards. I quickly went downhill and saw the GP three times with no success – diagnosed with tension headache. By October, I was incapacitated every day and rolling around on the floor screaming in agony, unable to function or to sleep. I began vomiting on waking and would vomit for several hours before the pain would settle a little, although I was barely functioning with the intensity of the symptoms.
I then saw a trainee GP who, baffled by what to do with me and thankfully wanted to do everything by the book, fast tracked me to see a neurologist as I now matched all the symptoms of a brain tumour. The neurologist said it was tension headaches, and only ordered an MRI scan because I had excessive plantar reflexes and was positive for Factor V Leiden (a blood disorder completely unconnected to the leak). He called me late at night after my MRI to casually tell me that I had a CSF leak and that such leaks were usually a result of a tumour and that I would need a full head and spine scan the next day. With two young children, the bottom fell out of my world at that news but, in all honestly, I already knew I was gravely ill from the symptoms. (Interestingly, for those struggling with diagnoses and for scans to be read – I could clearly see on my scan pictures, two definite and large sacs of fluid on either side of the top of my brain – two subdural hygromas. There was no doubt of a leak.)
Whilst waiting for the scan, new symptoms developed: Rushes of fluid (tasting like licking a battery) into my throat, horrendous tinnitus like a helicopter whirring not just ringing, aphasia ( I had trouble remembering words and speaking), tingling and numbness in my right arm and a feeling of compression across my throat.
At this stage the Neurologist decided I had low pressure from a spinal leak despite me explaining many times the fact that I never had an upright or orthostatic headache. I was lucky my neurologist had some knowledge of CSF leaks but I felt he was hoping that by identifying that it was low pressure and to simply to lie flat, it would go away. My 2nd MRI could not locate the spinal leak they were looking for and so I was advised to lie flat, take caffeine pills, drink as much coffee as I could manage and that I would be placed on a waiting list for one of the 18 beds available in the Neurology ward at Queen Elizabeth Hospital, Birmingham where I was to have a blood patch. It later transpired that I never had a spinal leak and trying to lie flat when you have two young children, one only a toddler, at home, a husband who works full time and no family locally to help was just impossible.
I got my bed on December 5th 2014. I spent two weeks in the neurology ward and was seen by more consultants than I can remember – all of whom had a differing opinion. There were only two anaesthetists in the Midlands able to carry out a blood patch so I was waiting for them. All this time the vomiting, tinnitus and pain continued. I was advised not to take painkillers and was not given any due to being told they would make my headache worse. Advice I now completely ignore and take all the pain meds I can get – I will never just accept that level of pain again. I was in a terrible state, became depressed and stopped eating. I had a further seven brain scans, CT scans and hours of testing. I developed a phobia of the MRI tunnel and now have to be sedated to have MRIs.
It took seven brain MRIs to eventually locate a 1.2 cm perforation of the bone in the left sphenoid of the skull which the team of neurologists decided was the most likely cause of the leak. So, cranial and not spinal after all, spontaneous and not due to facture. At least I had an answer, although I then had the prospect of waiting two weeks over Christmas for an ENT surgeon to see me whilst I sat in hospital. I discharged myself and decided to await seeing the ENT as an outpatient. I made it home just in time to have Christmas day with my children, although I was only up for about an hour of the day.
I saw my excellent ENT consultant in January 2015 where we planned to repair the perforation using pigs intestine (!) to line the skull via endoscopic skull base surgery. The side effects of which could be; loss of sight, facial disfigurement and brain damage. The operation may not even work. Without it, I effectively had an open pathway to the brain and could develop meningitis. The consultant had done it only once before. It was the most unbelievable news – I had a solution but what a decision to make – whether to put myself through this! – with no guarantee of success. During the wait for my operation scheduled April 21st 2015, I saw many consultants to monitor what they now thought was high intracranial pressure. Each one had a different opinion on whether I should or shouldn’t have the operation. No-one really seemed to have an answer.
It was during the wait for my op that I begin to notice very slight improvements in symptoms, so much so, that we kept postponing the surgery until eventually I decided with the ENT consultant and another Neurologist and headache specialist I was now seeing, not to risk going ahead with the surgery. That was exactly four years ago. The first three years I suffered daily symptoms the same as always but on a milder scale, lessening gradually as time went on. Sometimes flaring up every few months for no reason to leave me incapacitated and confused as to why. I lived a careful life at first and then decided that if I had some sense of a life back, I was going to make the most of it and took up pole fitness and running, often exercising with terrible headache, vomiting and fluid dripping from my nose. I’m not advocating such strenuous exercise for any leaker however, for me it gave me a sense of strength and vitality and I’d always been active before, being a “sick” person made me feel worse. No medical professional had advised not to exercise – the leak was not triggered by physical activity.
Over the past two years, I’ve been advised to try many different medications to try and alleviate the mild yet ever present feeling of headache and pressure in my head. None of these medications have ever worked. The last year has seen my symptoms continue to gradually improve to the point where I finally feel like I am almost back to normal.
My current consultant, a neurologist and headache specialist has concluded that I suffered a spontaneous Cranial CSF leak from a congenital thinning of the bone in the skull behind my left cheek. The thinning has probably been there from birth but higher intracranial pressure basically blew this hole, allowing the fluid to collect in two subdural hygromas – a CSF leak.
This increase in intracranial pressure may have been caused by sheer exhaustion – due to a preceding two year period of me only getting sleep in 20/30 minute snatches of a total of two hours a night due to our 2nd baby who did not sleep. Or to the head injury.
My ENT consultant said my perforated bone could be like a pepper pot – leaking sometimes and sometimes not. A description that seemed to make sense.
My most recent scan a year ago shows no leak and no hygroma on the brain. The conclusion being that the meninges of the brain can take many years to repair hence why it has taken four years to recover and why I still don’t feel quite 100% back to normal but have no active leak. I often need to lie down, not to sleep but to rest. I suffer with fatigue and mild head pressure. I’ve been advised this could be fluctuating intracranial pressure or that damage to the meninges has caused a bruising type effect leaving me with tendency towards headaches. I think I accept that as the best explanation from all I’ve heard from the many consultants.
I can live with the mild head pressure and fatigue as I’m back to living a relatively normal, active life now. I have had to make adjustments to my life to enable me to manage symptoms like eating regularly, sleeping well, in order not to get “secondary” headaches.
I am genuinely grateful for every day that I feel well. I know I am not 100% back to normal and wonder if I ever will be. I get frustrated when I have unexplained periods of relapse in symptoms and am frightened of the leak returning. My consultant has told me to let it go and not live in fear but I now know the physical pain of a leak and know I am not strong enough to go through it again.
I have sought alternative treatments such as acupuncture and swear that my cranial osteopathy has been the most successful of all the treatments / advice I’ve ever been given. I know these won’t “cure” a leak but for me, with no solution except a risky operation and so many conflicting opinions, it became a matter of managing symptoms.
I have tentatively returned to work in the last year and built up my hours slowly and last year I retrained as a yoga teacher. I now do a job I love, can physically manage and which has taught me acceptance and gratitude.
I’d like my experience to give other leakers hope that I am proof there can possibly be improvement and resolution without invasive procedures and that in the midst of feeling hopeless, there may just be better times ahead.
I also hope my story clarifies some points for other leakers which I feel are frequently misunderstood.