ARIANE O'BYRNE Ariane is a member of The Millennial team and recently has been diagnosed with a Chiari Malformation. This is a follow-up article on her problematic health.
So I’ve decided to do a follow-up article on my health journey. A part of me wants to do it for myself to look back on and a part of me wants to help other people who may be in the same or similar situation as myself.
So since my last article when I described my diagnosis of Chiari Malformation in detail, there have been more complications. Not only are my symptoms becoming worse and more frequently but I’m starting to get frustrated and wondering how long it is going to be before I can feel normal again. When am I going to be able to feel every part of my body at all times or when am I going to be able to function without sleeping three to four hours a day?
For anyone who doesn't know me I am a very down to earth person, I don’t really have a filter (not sure if that can be a good or a bad thing) and I have no problems with talking about my personal life etc. However, with this occurring in my life I almost feel embarrassed to tell people what is going on. For example, I’ve started dating again and to open up to someone completely new and to tell them that in a few months I will have to undergo brain surgery is mortifying. I’ve been lucky enough to find someone who didn’t run away when I mentioned it to him and he has confided in me and the support I’ve gotten from someone who I’ve only known for a month has given me faith in humanity and men again (that’s another story to tell).
My Dad suffers from an illness of the brain called Cerebellar Ataxia (I always wonder who comes up with these mental names, like why can’t they call it Back of the brain illness or something easy). Anyways, in baby language, it means the cerebellum of the brain which controls your speech, coordination, balance etc is fading away so in result his capability to perform daily takes has become a lot more difficult. He no longer works and my Mam is his full-time carer, it can be hard for us all but it could be a whole lot worse. So immediately when I was diagnosed with Chiari Malformation in which the cerebellum of my brain is hanging down from my skull my mam panicked thinking it could be due to my dad's illness as its the same part of the brain, but we were wrong. I mean what are the chances of having two people in the same family with problems in the exact same part of their brain but it’s completely opposite?
Below is a picture of this Christmas of myself and my Dad.
So due to my Dad not working etc I avail of a medical card. However, my GP recommended that we go privately to see Neurosurgeon Dr Donnacha O'Brien in The Hermitage Clinic as he wanted me to be seen quickly. The cost of the appointment was covered by my Nana who I’m unbelievably grateful for having her during this time, the woman is like the modern day Mother Teresa. Now I’ll give you a laugh, the waiting room had about eight chairs in it and here I am with myself, my mam, my dad and my Nana into this small spaced waiting area. We were like the Brady family taking over The Hermitage. The woman behind the desk pops her head out and asked “are you all together?” and it is safe to say I was absolutely scarlet. Sitting there I was getting nervous as I thought I’d be obtaining all the information for surgery dates etc. So we’re sitting in the waiting room everyone on top of each other and my Nana decides to take out her new Instagram page (The woman is 83) and begins to watch all the videos from the RTE Instagram page; she could make anyone's day brighter.
And there I was, ten minutes later looking at my weirdly deformed brain on a large computer screen talking to a man who knew each and every detail about the human brain. He informed me I was an interesting case and that he was “obsessed” with me and my brain. Firstly because I was born three months early, I was also a twin in which he passed away (R.I.P Gerard) and I also had an excessive bleed on the brain as a baby. Describing my list of symptoms he interrupted when I mentioned the blurry cloudy vision that I get every day; which I was previously told by the medical staff in the Royal Eye and Ear Hospital that it was just ocular migraines that I was getting EVERY DAY OF MY LIFE.
He informed me that I have an excessive amount of fluid right in the centre of my brain, my ventricles in my brain are more dilated what they should be and that I need another two more scans. A more detailed scan of my brain and a scan of my spine. Due to my numbness, he thinks there could be a sphinx on my spine, which is basically an abscess on my spine due to the build-up of fluid. So within twenty minutes of my appointment I was told I may need one operation to place a shunt into my brain to drain the fluid on my brain into my abdominal area, then an operation on my spine in which he will need to put a shunt into my spine to drain the fluid from there and then finally last but not least an operation in order to fix my Chiari Malformation.
I thought I was going into this doctors room to be told a date for my operation but instead I was being told that I will now need an EXTRA TWO OPERATIONS. Whatever I did in my past life to deserve this I truly am sorry lol. So now I’m waiting to see an ophthalmologist in order to check the pressure behind my eyes, waiting for an appointment to get my next two scans and then another appointment to meet with Donnacha again. Now, this is the crazy part in total it would cost my family 800 euro just for the scans, nevermind the ophthalmologist appointment as well so I have to go public in Beaumont for my scans and who knows how long I’m going to be waiting.
All in all, I’m coming to terms with everything that is going on, staying positive and even make jokes about myself calling myself watery brain. Sure if you don’t laugh in life, what can you do? Cry and I don’t want to cry because I am still very lucky to be alive due to my poor mothers horrific birth with me. But I was a fighter then and I am continuing to be a fighter.