I’m about to undergo surgery to correct a leaky brain – meaning, I have cerebro-spinal fluid leaking out of my body, otherwise known as a CSF leak.
I’ve had a fluidy ear for years – at least 14 years as I write, but it didn’t get to the point where a medical person saw it as a serious condition until mid 2013 when my eardrum ruptured. I’m writing this post to describe my symptoms and the progress of this thing in the hope that you reading it might find it helpful and that you can get a quicker resolution to the issue than I’ve had.
First of all, a CSF leak is an unusual thing.
Unless you’ve had a blow to the head, a spontaneous CSF leak is an unusual thing. Most of the medical staff on my surgeon’s team hadn’t dealt with one before.
Secondly, the medical world doesn’t know why it happens.
It might be because of a genetic tendency, it might be because you (like me) have hyperflexible joints and connective tissue, it might be because you’re slightly overweight, it might be because you’re female, it might be because you’re middle aged.
It might be all of these things, and none of them.
There seem to be slight associations between all of these things and a CSF leak, but some people who have a leak are young, fit, male, in the ‘normal’ weight range, and have no family history of CSF leaks.
In short – they don’t know why CSF leaks happen, they just do.
How do you know if you have a CSF leak?
For me, I’d had a fluidy ear for years. This means it was like hearing under water. I had to pop my ears to hear, and the clear hearing lasted for only a few seconds.
When it first started I saw my GP who referred me to an Ear Nose and Throat specialist. The specialist’s concern was for my hearing – as long as I could still hear something he wasn’t at all bothered by the fluid. His only caution was to not pop my ears very often as it would weaken the eardrum.
Over the years I’ve seen many many medical and alternative people about the fluidy ear. I’m a counsellor and being able to hear is an essential part of my job – so I’ve never stopped hunting for a solution.
But one day in May 2013, I blew my nose and fluid came shooting out of my ear. There was no pain, just this fluid leak. 24 hours later though I was in agony with an ear infection. Two courses of antibiotics were required to clear it up, along with antibiotic drops. The rupture would heal itself, said my GP.
Only eight weeks and a second ear infection later, it hadn’t healed.
So she referred to me an ENT specialist. His thought was that the rupture was not healing because of the fluid which drenched my pillow, my hair and my pyjamas every night.
“It can’t heal while it’s so wet. The fluid must be CSF, we need to check,” he said. Only the test said it wasn’t. He put me onto some potent corticosteriod drops which would heal the perforation in a month – only it didn’t.
So we tried the same course of treatment for a second month. “Sometimes it’s slow,” he said. “We do operate to heal ruptures but this is really tiny so there’s no reason it shouldn’t heal itself.”
A month later it hadn’t healed, so he referred me to the ENT specialist he himself would see if he had a similar problem. This ENT was convinced the earlier test result must have been wrong and he retested the fluid: definitely CSF.
He explained that the fluid was likely leaking through a tear in the dura, which is the lining or skin of the brain. The brain usually floats in fluid and when the fluid leaks out, a condition called low pressure headache was often the result.
Yes, I’d been experiencing this kind of nagging niggling headache for years. On a scale of 1-10 it was usually only a 1 or a 2. It was never present when I woke but within an hour or so on many days, there it was: a slight pressure at the temples and often accompanied by a slightly foggy head that made it difficult to concentrate and general feeling of tiredness.
I was *gobsmacked*. All these years I’d been putting these symptoms down to pressure of life, eating less-than-optimally, feeling stiff after hours of desk work. or just plain tiredness. I’d spent a fortune on all kinds of programs to increase my energy, improve my food habits and more – and quite probably it was all due to a leaky brain!
Well time will tell anyway.
Surgery is next week (I’ll update this post afterwards). Andrew and his team are drilling through my mastoid bone to locate the hole. They’ll chop off the bit of brain that has herniated through the .6mm hole (apparently it’s probably not functional now that it’s herniated), patch the brain, then patch the hole with the bone pate they’ve just removed (I know… bone pate… LOL gross), move some of my skull muscles over the hole to cover it completely to force my body to make scar tissue to keep the patch in place.
What happens next depends on what my body does.
I’ve had this leak and consequent low pressure for years. So my body makes more CSF than I’d need if my brain was sealed. Once it is sealed again my body will need to adapt to making less CSF. Apparently a solid headache is coming my way as the CSF pressure rises (luckily there are drugs! Since I don’t use a painkiller any more than once a month, if that, they work very well for me!).
But if the CSF pressure rises too much it might bring on the leak again – so then it will be a lumbar drain and five days flat on my back to ease the pressure and allow the hole to seal fully.
My plan to deal with this is to tap for normal CSF pressure as soon as I’m compos-mentis again, and trust of course that my body still knows what ‘normal’ is 🙂
Anyway I’ll update this in a week or so – and hope that my experience has helped you if you think you might have a CSF leak.
Update: Two weeks after surgery
Surgery went well. I woke with a huuuuge bandage on my head and quite the headache. Endone took care of that sucker 🙂
Three days later I was home. Two days after that the 33 staples came out.
Four days later the incision was infected.
I’m really really tired. Medical friends have reminded me that it’s okay to be tired still – my body is fixing brain, making new bone, new nerves, new muscles, new skin…. patience, grasshopper!
Already I have zero low pressure headaches, but I can see why I put all those years of headaches down to just feeling tired – it’s a similar feeling.
And a dry pillow and dry hair every day! YEH!
Oh – and funny thing – I used to get puffy feet at the end of the day. Gone. Homeostasis, I guess….