Monday, 8 June 2015

What is Chiari Malformation?

Hello again,

You might have already seen my previous posts and wondered, what on earth is Chiari Malformation?

You’re not alone! I’m doing my little bit to raise awareness as I am a “chiarian”, a “chiari warrior”, whatever you want to call it, I have chiari!

The science.
“In this condition the cerebellar tonsils of the brain descend through an opening in the base of the skull (named the Foramen Magnum) into what should be a space in the spinal cord. This can cause compression of the brain stem and disruption of the flow of cerebrospinal fluid (CSF) at the top of the spinal canal. This can cause a number of symptoms: pain and tingling in the limbs, dizziness, nausea, balance problems, visual disturbances, problems swallowing, pressure headaches, which worsen when straining, laughing or coughing” (Source: The Ann Conroy Trust (ACT) you can also see more facts from them on their Facebook page here)

How does it affect me?
Firstly I must stress that this condition varies and it affects people in so many ways.

  • Headaches that range from migraine type headaches (I am a migraine sufferer as well) to a dull ache that feels like a rod going through my head and out of my neck
  • Dizziness. Different floors and lighting can make this work and on my most recent trip to London I found that the tube made it worse.
  • Pulsing in both eyes
  • Pins and needles / strange sensation in upper and lower limbs. – Arms – the top of my arms feel as though they are heavy and the sensation when anything touches them is like having a thick wet suit on and something rubs across it... I get really bad pins and needles in my hands and my feet. 
  • Sometimes usually if I’ve been shopping and carried lots of bags I have had squeezing down the back of my neck really hard and pressing my shoulders – it also happens on bad days when I am sitting upright.
  • Slurred speech 
  • Memory loss and confusion 
  • Exhaustion/tiredness

These aren't all present all of the time but they are what I have experienced for the last three years and continue to experience. At the time of my diagnosis I was also diagnosed with another condition called intracranial hypertension (often abbreviated to IH, IIH or BIH). This is due to high pressure inside the skull. Recently I discovered that I have something else going on in my ‘brain space’. I am not really comfortable discussing this at the moment because I don’t really know what it means and I have not had my follow up appointment. All in all it is hard to pin point what condition causes what symptom and like I said, it seems that it affects people differently. The condition is complicated and quite rare so there isn't a huge amount known about it.

Is there a cure?
The simple answer is: No.
There are surgical options and medicines to help with the symptoms. The success rate varies. There is no miracle cure but people can go on to live a relatively “normal” life. This makes me live in hope for my future. There are so many things that I want to do and achieve. I hope that this is just a difficult spell in my life and that one day I can go on to achieve everything that I had set out and worked so hard for before I became really ill three years ago.

I hope this helps you to understand a little bit more about what makes me, me. I am not alone and it is a great comfort that I no longer have to endure this condition alone. I mean, I have got the most supportive family. I love them beyond words and they are the biggest safety net that catches me when I fall but to know that there are other people out there that literally know how I feel, have experienced it and can offer practical and emotional advice is such a huge deal. Thank you ACT!

If you would like the chance to win a special hand-made (by me) cuddly Elephant (it was the most popular choice when I asked on the trust forum and my family and friends). Please visit my just giving page and make a donation. (Every penny will help) and for every donation made, I will be making a small heart – these will be stuffed into the Elephant.  In the comment section please state that you would like to be in with the chance to win. *please note that anyone that wishes to remain anonymous will unfortunately NOT be entered into the draw*. The draw will be made on Wednesday 1st July 2015 at 7pm GMT. REMEMBER, YOU MUST LEAVE YOUR NAME IN ORDER TO BE IN FOR A CHANCE OF WINNING!  (if possible leave twitter/facebook/instagram details too so I can easily contact you if you win).

Don't forget, you can find me on

I promise I will give regular Juno updates!

Love and hugs (and spoons for any chiari people reading this!)

1 comment:

  1. I used to get migraines when I was a teenager. I used to be able to time how long I'd got before I needed to be home (or at least somewhere "safe"). On one particular occasion my history teacher didn't believe me but my English teacher did so she signed my note for me to go home (I think it was supposed to have been signed by my form tutor but at the moment in time I didn't care lol). I would get a spot in my vision that wouldn't go, the chills and then sort of a fever, vomiting and aches. Not fun - imagine having that the amount of time you do would be horrible. You keep going and keep managing to do all sorts of bits. And you managed to get all the way down here for my birthday! YOU ROCK lovely!