So I may have spilled the beans as to what I have at long last been diagnosed with, but what exactly is Chiari Malformation?
It occurred to me a few days ago that it has taken me years to gather up all the information I’ve found about Chiari and the biggest problem I came across was that none of the GPs I saw in the UK had much, if any idea of what I was talking about when I went to see them.
The chances are that most of you who read this might not have a clue either.
So in a nutshell-ish… apparently Chiari is fairly rare, although of this I’m not totally convinced. There are a crazy amount of people out there in Facebook groups all with the same diagnosis. In my mind it’s more likely to be overlooked and passed off as ‘migraines, cluster headaches, stress’ or something similar.
Of all the people I have spoken to with Chiari not two people have the exactly the same symptoms. Sure we may all suffer with a few things the same but then one person might deal with severe nausea whilst another may be dealing with shooting pains up and down a limb or even tinnitus 24/7.
Here’s a list of the things I’m currently dealing with, the ones in bold are generally a daily occurrence for me since before Christmas;
- Constant headache for weeks at a time
- Excruciating throbbing pain when bending down/standing up/ straining starting at the base of head, shooting up the top of skull to forehead and horrendous stabbing/pulsing pain for a 5/6 beats
- Severe pins and needles in hands at night
- Constant uncomfortable pressure in base of skull
- Visual disturbances, black spots in vision, involuntary eye shakes
- Intolerance to bright light
- Painful tension in neck and shoulders
- Unable to relax
- Pressure around the eyes, sore eyeballs
- Tense / anxious
- Purring in ears
- Intolerance to loud sounds
- Decreased sensation to touch in extremities
- Spontaneous vertigo
- Poor blood circulation, cold hands and feet
- Difficulty focussing on text
- Blurry vision
- Visual floaters
- Low blood pressure
- Heavy legs
- Extremely fatigued for no reason
- Loss of use of legs for a few moments
- Swollen feeling in finger joints
- Difficulty finding words when talking
Now on a bad day that’s a lot of shit to be dealing with!
Thankfully I don’t have all of these problems at the same time all day and night long, but some symptoms are with me most days and others seem to come and go.
The most difficult ones to cope with are the excruciating pain when I do any sort of bending, straining or lifting and the numbness to my hands – using the mouse or keyboard is so weird as I just cant feel what I’m doing. I can see my fingers tapping away but it takes me three or four times longer to do anything as I’m having to slow down to make sure I’m getting things right.
When I’m working as a freelancer time is not only money but is of the essence!
But why do I get these problems…?
Now then, here’s a pretty cool bit, pictures of my brain, yes, yes, I do in fact have one, contrary to popular belief!
After chatting with the neurosurgeon last week I now understand that there are two reasons to answer the whole ‘why’ question.
- My cerebellum should be a nice little coral like structure that fans itself out and floats about (at least that’s how I like to imagine things) nicely in my cerebral spinal fluid (CSF) However… mine is soooo squished up that there’s virtually no room for my CSF to flow around the cerebellum and in turn its forcing itself up against the other areas of my brain. Areas like the occipital lobe that have all sorts of pretty important jobs like dealing with vision for example.
- The second issue is that my cerebellum doesn’t stop where it’s supposed to. Instead it squishes itself further towards my spinal column and that means that there’s yet more pressure being created and thus causes more problems! Aye aye aye!
I’ve marked up my MRI in the hopes that it helps to explain things and who doesn’t love a visual?
So what’s next then?
Well simply put there are two options…
Don’t operate and pray things don’t get worse, although after my symptoms suddenly went from bearable to feeling like I might not make it through the night some days, I’m not overly keen on the whole ‘wait and see’ scenario. As the general consensus seems to be that things can and WILL get worse.
Or… I can dig out those big girl pants again, suck it up and get myself in for surgery. Of course there are risks involved, it is brain surgery after-all, and there are a lot of things to think about. Things like work, how we’ll get by whilst I’m in recovery, as well as all the what-if questions.
Plus it turns out that having the surgery isn’t actually a cure, it’s not likely that I’ll ever go back to life as I remember it before Christmas. Yep, that sucks more than just a little bit but if having the surgery stops things getting any worse than they already are and even if there is a teeny glimmer of possibility that a few, or even a couple of my symptoms get even just the tiniest bit better then I’ll take it, sign me up and put a zipper in the back of my head!
The next step feels like waiting for Santa to arrive, I’m waiting for the report from the neurosurgeon to arrive in the post so we can find out costs as well as the how and when I can actually get this hugely massively scary big ball rolling…!
At the moment I feel like a Chiari warrior but I’m determined to become a Chiari survivor!
More official info here; http://www.chiariinstitute.com/