Wow I can’t believe it’s been a whole year since my surgery, it still feels surreal one year down the line!  It seems rather fitting then that this blog writes about my surgery day on my first anniversary!

With only 72 hours until I went to Edinburgh for brain surgery I suddenly had the most horrendous thought…my legs needed shaved!  What could possibly be more embarrassing than being seen with hairy legs? (it turned out quite a few things were more embarrassing but I’ll explain that at a later date!).  By this point though I couldn’t control my arms and legs very well, they would often twitch/jerk at random moments and my movements were stilted and clumsy, so holding a sharp instrument against myself was not a good idea!  That’s where my loving, patient partner came to my rescue!

I’ve a funny story to tell about my partner Lindsay, she wanted to stay in Edinburgh for a few days after my operation so she could be closer to hand for those first few days of recovery (we lived a four-hour round trip from the hospital).  As her mum and I were browsing online for a B&B/hotel for her, she casually tells us not to bother booking anywhere as she would sleep in the back of the car with our dog – Dexter the black Labrador!  I looked up thinking I would see a twinkle in her eye as she tried not to laugh at her own joke, but no, she was deadly serious!  Needless to say it was a resounding no from her mum and I!

As operation day approached my only noticeable anxiety was finding it hard to sleep, but if you were to ask me at that time if I felt nervous about going for brain surgery I would have said no.  To me it was just something that had to be done – no ifs, buts or maybes.

On Monday 20th April 2015 Lindsay and I set off to Edinburgh at the ungodly hour of 5am! As we approached Edinburgh I decided I would post a final message on Facebook, here is a copy of that post:

2016-04-07 (3)

So even down to the final hours before surgery I refused to be sombre about the occasion!  Everyone who knows me will tell you I am Christmas mad and so this post seemed very apt for me, my mentality was if these were to be my last words to my friends I wanted them to be fun and upbeat!

We were 15 minutes late for the ‘check in’ time we were given so I was met by a waiting neurosurgeon and taken into a cubicle for last-minute health checks by the nurse (blood pressure and temperature) and then given the all clear for surgery.  I was wheeled down to theatre on a chair and as we approached the double doors to the main corridor leading to theatre that was where Lindsay and I had to say our goodbyes.  As I turned to Lindsay to say goodbye I was overcome with emotion I couldn’t speak for the lump in my throat, for the last 4 weeks I had kept it together and had been big, brave and strong – for Lindsay as much as myself – but at that moment I admit to having a wee wobble – lousy timing emotions!  I managed to squeak out “I love you” before I was wheeled away through the double doors and the tears began to fall.  The porter put his hand on my shoulder and said that’s the part that gets everybody.

The next part is all a blur!  I met with the anesthetist who I had met at my pre assessment, and she put a canular in, but what was said after that, I can’t remember!  I thought I would remember counting backwards or something dramatic (I’m sure they do on t.v!) while the anaesthetic took effect but I don’t remember a thing!  I had been told that after surgery I would be taken to an after surgery room to be brought round from the anaesthetic and several neurological tests would be done to make sure everything was as it should be, but I don’t remember that stage either.  My first memory was of Lindsay looking down at me and I was in the high dependency unit (HDU), I remember thinking at that time “I feel remarkably well considering!”

The neurosurgeon came to visit me and told me there had been a complication during the procedure and as a result I had been in theatre for five hours instead of the expected three.  Now that was of no consequence to me as I was out for the count for those five hours but my heart ached for Lindsay as I thought of the anxiety she would have felt waiting all that time for news, it must have been excruciating…as it turns out not so much because Lindsay had gone back to the car and fell asleep for most of it!  (For those who don’t know Lindsay, napping is what she does best, especially under stress!).

The complication the neurosurgeon referred to was that the route they had originally taken to reach the cyst had not been successful, so they had to retreat and take a different route.  They had to lift the cerebellum in order to see and reach the cyst and it had attached itself to some pretty important nerves (well it had had 39 years to make itself at home!) so it was never going to be possible for it to be removed completely, but they were pleased they had been able to remove as much as was safe to do so.  And despite the original setback the surgeon had said that the operation had been a resounding success and no unnecessary damage had been knowlingly done to any surrounding nerves, tissue or muscles!   After seeing first hand the position of the cyst she reiterated what she had said to me at our first meeting that she was surprised I could still walk, talk or swallow.

As I came round a bit more It dawned on me that I couldn’t see too well, my sight was blurred and I had triple vision,  Lindsay told me later that when I looked at her my left eye was directed at her but my right eye was looking as far right as it could, she found it very disconcerting as she talked to me!

The neurosurgeon assured me that the damage hadn’t been caused by surgery itself in as much as no optical nerves were damaged during the procedure, rather the damage would have been caused by the pressure to my eyes as I lay face down for the five hours, and it would be an unknown as to whether it would improve and, if so, by how much (I’ve came to slowly understand and accept over the last year that a lot of the neurological deficits experienced after brain surgery are very much an unknown as to regards to whether they will improve and, if so, by how much).

After Lindsay left I settled down to sleep, I had an intravenous patient control pump (morphine) which allowed me to self-administer so that I could control the level of pain relief as and when I felt I needed it.  I felt a niggle but didn’t bother pressing the button, the niggle grew to being a wee bit painful but again I refrained from pressing the button, I’d put up with a lot of pain before the surgery and so still didn’t think this warranted a dose of morphine.  How wrong that proved to be, because from being a wee bit painful it seemed to jump all other rungs on the pain ladder and shot to the most excruciating and unbearable pain imaginable.  After I pressed the button there was a period of time – called lockout time – in which I couldn’t press the button again, even if I did the pump wouldn’t dispense the medication.  After what seemed like an eternity the pain started coming down to a tolerable level but I continued to monitor that button and as soon as the light came on (that meant it was ready to dispense again) I pressed it!  There was no way I was going to try to be big and brave again after the pain I had just experienced!

I’m not sure how much time passed with me doing this but I must have fell asleep eventually!

 

*please feel free to visit my Facebook page:

https://www.facebook.com/myarachnoidcystjourney/

 

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