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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3 thoughts on “I’m a 40 year old blogger virgin wanting to share my story about having an arachnoid cyst and brain surgery (part 1!)”
I enjoyed the read. I just found out I have one on spine which could explain a lot of things but not enough apparently to do anything about it. I had to blame it all on fibromyalgia before and these back-headaches that are migraine-like are apparently not from a thoracic cyst so no point having surgery if it won’t get rid of them. I’ve been putting up with aching legs all my life and now I’m 60.
Hello! Just found your blog. I’m a 2-time brain cancer survivor. I’ve now undergone 3 brain surgeries in the last 2 years, so I can relate to much of what you’re writing about. I’m looking forward to more posts and hope that you read about my experiences on my blog. xoxoxo
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Hi, I found about it Janauary that zi have arachnoid cyst posterior fossa also. I don’t know if I am excited or scared to read the rest of your blogs😑 I have not had surgery, really don’t want to have it as I already have C4-C7 of my neck fused together, if you want to hear more of that story you can check out my blog. OK, I think I have enough courage, if you haven’t put how big your cyst was will you please reply and let me know, for comparison purposes…thanks and gentle no touch hugs