Happy Brain Surgery Anniversary – 1 Year Today! (part 4 of I’m a 40-year-old blogger virgin…!)

Happy Brain Surgery Anniversary – 1 Year Today! (part 4 of I’m a 40-year-old blogger virgin…!)

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:

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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!


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I escaped from hospital…but now I want to go back! (part 3 of I’m a 40 year old blogger virgin…!)

I escaped from hospital…but now I want to go back! (part 3 of I’m a 40 year old blogger virgin…!)

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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Part 2 – I’m a 40 year old blogger virgin sharing my story about my arachnoid cyst and brain surgery

Part 2 – I’m a 40 year old blogger virgin sharing my story about my arachnoid cyst and brain surgery

Where was I? (if you’ve come in at this part you won’t know where I was either!  This story is carrying on from ‘I’m a 40 year old blogger…part 1’!).

Oh yeah I was being detained by the NHS against my wishes!  But if I had walked out of the admittance ward for the sake of my visitors arriving from Hull then it would have delayed the investigation into what was causing my symptoms.  I was tempted but my doctors words were ringing in my ear (along with the tinnitus – one of my symptoms!) that he thought it could be MS.  Although it wasn’t by any means a positive diagnosis, it was enough to keep me from doing a Steve McQueen great escape!

I had a CT scan and then had to wait for someone to come and explain what the scan showed – if anything.  By now, despite my good intentions of not escaping, the longer I was left waiting the more I plotted and schemed of a way to get out!

Finally, late in the afternoon (I had been there since 9am) a consultant came to speak with me regarding the scan. He told me that the scan showed I had an arachnoid cyst on my brain which was probably congenital and I would need to be kept in for an MRI scan.  With that, he left the ward.  I watched him leave the ward and, although I can’t remember, I wouldn’t be surprised if my mouth was hanging open!  I was frustrated, hungry, upset at not being there for my visitors and  in need of nicotine and the consultant just speaks complete jargon to me and swans off.  Now excuse my ignorance but I didn’t know what congenital meant then,  I didn’t know what the implications of having a cyst on the brain were and the only thing I associated with arachnoid was the scary movie about spiders! (I know the movie title doesn’t have the ‘o’ in it, but arachnid/arachnoid same difference to me at the time! I also know that some people would scoff at me using the term scary to describe that movie but what can I say I’m easily spooked…just ask Lindsay!)

After a restless nights sleep, I was seen by a different consultant who explained the CT scan findings to me in laymans terms, so now I knew congenital meant present from birth, and arachnoid meant ‘the fine, delicate membrane, the middle one of the three membranes or meninges that surround the brain and spinal cord, situated between the dura mater and the pia mater’ (I’ve just lifted that from the dictionary because even in laymans terms I’m struggling to recall her exact definition!).  She also explained why I needed an MRI scan and said I would hopefully have the scan today, but if it couldn’t be done today (Friday) it would be Monday.

I jumped on the possibility that if it couldn’t be done today then it was pointless taking up a bed over the weekend and I might just be able to escape – if only for the weekend!  So I asked her if the MRI scan couldn’t be done today could I go home to my visitors on the promise I would return Sunday afternoon!  She couldn’t see a problem with that!  Her approach and manner towards patients were so different to the consultants from the previous night, I wish I could have bottled it up and sprayed it on him!  But that continued to be my experience through the course of my care with those in the medical/health care profession.  Some excelled in their standard of care, empathy and compassion, while others failed completely in these qualities, thankfully I can say the latter occurred the least often.

I didn’t get the scan that day so I did get to escape to spend time with friends and I did return on the Sunday afternoon as promised!

To be continued in part 3…

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I’m a 40 year old blogger virgin wanting to share my story about having an arachnoid cyst and brain surgery (part 1!)

I’m a 40 year old blogger virgin wanting to share my story about having an arachnoid cyst and brain surgery (part 1!)

The title pretty much sums up the bumpy ride readers may experience as I get to grips with what I’m doing (or don’t get to grips as the case may be!)

I’m on a journey of recovery after brain surgery – a result of the discovery of a posterior fossa arachnoid cyst a year ago (March 2015) and I wanted to share that story with others, firstly to raise awareness of arachnoid cysts and secondly to document the journey I’m on.  Although I’m almost one year post surgery I’d like to start my story from the beginning!  So here goes..

I went to my gp at the beginning of March 2015 after my colleagues had nagged me at work (because I had taken several dizzy spells in their company!). I don’t like going to the doctors, for some reason I feel like I’m wasting their time, but after much nagging and threats of being dragged there by my colleagues I eventually went!

At this point my symptoms were nausea, occasionally followed by actually vomiting, a swooshing/ringing in my right ear, a sensation of falling inside my head and occasional weakness in my wrists. My gp gave me anti sickness tablets on the thought it could be vertigo, however he said he wasn’t convinced with that diagnosis. He asked me “if I had always spoke like that”, I have no idea what he meant by ‘like that’, what he meant was had I always slurred my words…not unless I was crawling out of the pub! He also discovered I had a nystagmus in my left eye.

Over the next 2 weeks my symptoms got worse and new symptoms appeared. Colleagues also started noticing and commenting that I was slurring my words (I’m sure they thought I’d came to work still intoxicated from the bottle of wine the night before!).  I began getting pins and needles in my arms, hands and face, and sometimes they would go numb completely. When I first woke up I couldn’t lift my arms or head for a while as they were numb. My balance and coordination were ‘off’, I was getting severe headaches (I never get headaches) and I was constantly tired. I made another appointment to see my gp, I couldn’t get seen for a week, and much to the annoyance of my colleagues (yes they were nagging me again!) I accepted to wait the week.

On the day of my appointment I was busy planning things I needed to do for the arrival of friends who were travelling up today from Hull and staying a few days. The last thing on my mind was getting admitted to hospital…but that’s what happened.  Firstly though let’s talk about the appointment, my  gp did several tests, one which was walking heel to toe, he demonstrated what he meant and he did it with ease, my turn…as I went to put one foot in front of the other I staggered off balance, I tried again but to no avail, each time I attempted it I would lose complete balance and stagger to the side. He asked if I was surprised I couldn’t do it, I wanted to reply yes I was surprised since I’d just witnessed my 50+ year old doctor manage it with no problem, but my actual answer was just yes I was shocked!  He then asked me to stand with my eyes closed, but as soon as I closed my eyes standing up I had the sensation I was falling and I began to sway. At that point the doctor told me he wanted to discuss his findings with his colleagues and then he would get back to me. So off I went with my head full of things to do for the arrival of my visitors. I drove to Tescos – less than a quarter of a mile from the doctors’ surgery – when my gp phoned. He wanted me to return to the surgery to collect a letter and then to take myself and the letter to the hospital for further tests. I am sitting in my car in a supermarket car park trying to process what he had said, when he continued to say he wanted to put his cards on the table and say he suspected it was MS.

Once he had hung up I drove home (food shopping for visitors abandoned) on autopilot and I was wondering what I was going to say to my partner, that was my biggest concern at the time.  I knew she’d still be in bed (well it was 8am and we were on holiday!) and I remember feeling bad at having to wake her so she could take me to the hospital…oh I forgot to mention the doctor didn’t sound too pleased that I was driving with my symptoms!  So I crept into our bedroom and watched sleeping beauty for a while before finally plucking up the courage to drop my bombshell.

We both sat on the bed in shock and decided the best thing to do in a time of crisis was to go for a cigarette (a dirty habit I know and one I’ve kicked but more of that later!). We decided Lindsay (oh I’ve not formally introduced you to Lindsay, she is the sleeping beauty that is my partner!) would stay at home and tidy the house and do the food shop for our visitors and her mum would take me to the hospital where I would have a quick test and I’d be back home before the visitors arrived…how wrong I was!

After my arrival at the hospital I expected to be seen straight away by the consultant named in my letter from my gp, however I was sent to the admittance ward where I assumed I was waiting to see said consultant!  Then the nurse who was dealing with me started to put a band around my wrist and I naively asked what that was for!  She said everyone had to wear an admittance band for i.d purposes.  My naïve response was – oh I’m sorry you’ve made a mistake, I’m not here for admittance I just need to see Doctor so-and-so and then I’ll be on my merry way!  She looked at me with a weary expression and said I wish doctors would tell their patients when they send them to the hospital they will be admitted so that an investigation to their symptoms can be carried out.  Oh but you don’t understand, I said, I’ve friends arriving from Hull in a couple of hours so I can’t stay long!

Well I am still on my recovery journey and I sadly tire easily, and I’m feeling weary typing so I’m going to sign off for now but I hope to continue my story over the coming days.  Thank you for reading this far and I hope the read wasn’t too laborious!

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