In my last blog I think I mentioned once or twice that I wanted to escape from hospital! But after the euphoria of being allowed home for the weekend had worn off I began to feel a bit vulnerable walking about in the outside world. What if the ‘thing’ on my brain started misbehaving?! But me being me I put on a brave face and hid my concerns from everyone, but there was a sense of relief at returning to hospital on the Sunday afternoon. I entered the hospital armed with munchies, an e-cig and a new-found determination to be patient and stay in for as long as it took to get things resolved.
On the Monday I had an MRI scan and underwent further tests, I was asked to say the phrases ‘British Constitution’, ‘baby hippopotamus’ and ‘West Register Street’ I tried to get my tongue round them but – it’s hard to describe, it was like trying to talk after being at the dentist – but then this wasn’t a new thing for me I’d always felt it a struggle to speak clearly. But up until now I’d thought it was just the way I spoke, to suddenly learn that it was caused by the cyst and that the correct term for it was dysarthria was all a bit overwhelming. I say that because the way I spoke had always made me feel very self-conscious, it often stopped me initiating conversations with strangers or speaking out in a group of people, and so affected me socially. My mind starting wondering what if? What if this cyst was removed would I be able to speak ‘normally’? To someone who had been so self-conscious and inhibited by their speech this was a tantalising prospect.
I was asked to repeat the heel to toe test that I had originally attempted at the doctor’s office, with the same consequences – I stumbled off to the side. I was also asked to touch my nose with my finger, and I thought well that’s an easy one at least I’ll pass one of their tests! I only succeeded in poking my cheek with my finger!
The next day the doctor explained to me that my scan along with their report on me had been sent to the neurosurgical team at Edinburgh hospital and I could go home and Edinburgh would contact me soon to arrange an appointment to see the consultant neurosurgeon. I asked if I would be able to return to work until I was contacted, I’m sure she tried to cover up the ‘is she kidding’ face when she said that really wouldn’t be recommended, I should go home and rest until I hear from Edinburgh!
I went home and started googling all the unusual medical words that were on my discharge letter! There were sentences that I had no idea the meaning of, such as, “there was effacement of the fourth ventricle, medulla and adjacent structures with no hydrocephalus”, but even after googling I soon gave up trying to understand! Instead I lay on the sofa and waited impatiently for the call from Edinburgh!
There were times I would feel guilty for not being at work, my reasoning was I had managed to work before regardless of these symptoms, but then there were days my symptoms were very prominent and I struggled with daily living.
After only a week after being discharged I received the call from Edinburgh and I was offered an appointment to have a ‘chat’ with the neurosurgeon. At this point, I was alarmed at the terminology ‘chat’ as I had been googling arachnoid cysts and had read that a lot of people were having difficulty convincing their gp or neurologist that their A/C was the cause of their symptoms, and, on that basis, they were being refused treatment for the cyst. Every forum and Facebook page I entered to do with arachnoid cysts all had the same underlying story, people were being told that arachnoid cysts were asymptomatic and they had been an incidental finding and not the actual cause of their symptoms. And so I travelled to Edinburgh with a certain amount of anxiety that the ‘chat’ I was about to have would be along the same lines.
I needn’t have worried, although a lot of what was said to me in that ‘chat’ was a blur the main thing that stuck in my mind was the neurosurgeon had said “obviously you can’t be left like this and so the cyst will have to be operated on”. The relief that my symptoms and the cyst were being taking seriously was immense, but then it should be said that at no time had anyone in the medical profession led me to believe otherwise it was only what I had read on the internet, so it made me realise that googling everything wasn’t always a good idea! (That’s not to say I always remember that pearl of wisdom!). Lindsay and I were shown my MRI scan and we were shocked at the size of the cyst and how obtrusive it looked. I was told it was a surprise I could still walk, talk and swallow with the damage that the cyst was causing to my brain stem. It felt surreal to me then and it still does today.
Shortly after this appointment I received a letter from the neurosurgeon which gave a very detailed account of what would take place through the surgical procedure. My favourite part of that account was “I will gently lift the brain up and the cyst should be apparent under the cerebellum”, another surreal moment, to think that somebody was going to be lifting my brain up!
The letter also gave me a detailed list of all the risks attached to the surgery, they ranged from “increased neurological damage, possible damage to the nerves to your eyes, face and throat causing swallowing difficulties, speech difficulties, double vision, weakness or numbness in the face”. She went on to say “there was a small risk of complete paralysis, or severe haemorrhage which could cause death or severe neurological deficits”. But she also wrote there would be risks if I did nothing, “If you did nothing the cyst would continue to cause more trouble and you could have significant problems with weakness of arms and legs, even more difficulty with speech and balance and the nerves to your face including the swallowing nerves could be affected and paralysed”.
Friends who have read that letter often ask where I got the strength to go ahead with surgery, but to me there was no alternative and so no hesitation, because when I compared the outcome of doing nothing with the outcome of any of the surgical risks, the possible eventualities were, in parts, similar. So I concluded I would rather try to do something to resolve my symptoms than sit back and do nothing and let my condition deteriorate. If that something was brain surgery then so be it!
My friends also found it peculiar that I appeared unfazed by the prospect of brain surgery and appeared more upset that I might need to have my hair shaved off! It was true, the thought of losing my long hair was a very big deal to me!
As I sat at home waiting for the big day my symptoms began to get worse and new ones developed. My lips, tongue and left cheek had begun going numb. My heels were also starting to go numb making it difficult to walk at times. I started having difficulty swallowing, at the time I found it hard to understand how one minute I would be eating and swallowing as normal and then I would be struggling with it, it was as if I would suddenly forget how to swallow, what we all might think as a simple daily thing that we do without thinking about it was suddenly becoming a struggle.
These new symptoms brought to mind the letter from the neurosurgeon and the warning she gave if I did nothing then the cyst could go on to cause the nerves to my face including swallowing nerves to be affected and paralysed, and so these new symptoms reinforced my decision to go ahead with surgery. They also made me feel a bit anxious that permanent damage might occur before I could have surgery. It was all a waiting game, but in retrospect I really hadn’t had long to wait. Only four and a half weeks had passed between that first day I had gone to the doctors with symptoms to the day of my operation!
I mentioned earlier that I had a habit of googling everything but when I learnt the name of the procedure I was having was a craniotomy fenestration I made the choice not to google it before my surgery. It was months after, when I was back home that I decided one day to google it, oh my gosh you will never know how relieved I was that I hadn’t done that before the operation!
On the subject of googling, I will admit to asking google if I should stop drinking wine and smoking before brain surgery! The common consensus of the internet was yes! So one week before surgery I managed to stopped smoking…but I carried on drinking wine right up to the penultimate night!
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