A Kaleidoscope! (EARLY MAY 2021)

A day of more excitement…!

Nine days after my ablation I was eating lunch and reading a book when I wandered off to get a chocolate covered cookie (mmmmmmm!).  When I sat back down and picked up my book, I became aware that I couldn’t read properly.  There was a ‘blob’ exactly where I was trying to focus on the words.  I cleaned my glasses, I washed my eyes with eye drops in case there was a bit of ‘sleep’ floating around, but it made no difference.  Then I noticed that everywhere I looked this multicoloured ‘blob’ was there, right in my line of sight.  And it was getting bigger!

Now some people tell me I have been stoic or brave during my cardiac problems, but I can categorically state that I was neither of those things on this occasion.  I was terrified.  I remembered that you are at increased risk of a stroke after an operation as well as with AFib, so I went to the mirror and gurned at myself to make sure I was not paralysed in my face and I tested that I could lift both arms and speak properly!  All the time this area was getting bigger and so was the panic in my head.  It was like looking through a cut-glass vase!  Really odd – and oddly pretty, through my mist of panic.

I decided to phone 111 and I described all the symptoms to them.  As usual, they said a clinician would call me back.  By the time I got off the phone the blob had vanished and I started to feel a bit of an idiot.  So, you can imagine my surprise when 111 quickly called back and said I was to go to A&E within the hour! I stressed that the episode was over, but they were insistent.  I considered ignoring it, but thought it was foolhardy to ring for medical advice and then ignore that advice.

I called a friend and he drove me there (I was forbidden to drive by 111, for obvious reasons).  It was to my local hospital and bete noire, the West Suffolk.

However, let the record show, that on this occasion they were magnificent.  I was seen by a nurse immediately, then by a doctor.  I’d barely sat down in the waiting room when I was called through for blood tests and an ECG.  When I came out of there, the stroke nurse was already hunting for me to take me for an ultrasound scan on my carotid artery!

I was then told to proceed to the eye unit which is where it got a bit comical.  You see, I could barely walk post-ablation, only very slowly and not very far – and WSH is huge.  I was walking for ages.  I had to keep stopping and resting and it took forever to walk through the buildings and out the back to where the eye unit is.  Once there, it was a further walk and once inside, a mammothly long corridor stretched what looked like miles (I know it wasn’t, but it felt like it) before an arrow finally directed me up an Everest sized set of stairs!  I had to haul myself up by the banister and felt terrible – sick and weak. I felt like I was in some sort of comedy sketch where the distance just go longer and longer as I got weaker and weaker!

Yes, I know. I should have explained that I couldn’t walk that far and got a porter to take me, but I look so fit and I’m just too damned proud!

Back to the story - I was given an eye test and examination by a nurse which was repeated by the consultant and then I also had an eye scan and he was confident that there was nothing wrong with my eyes.

I had arranged for my husband to collect me and drive me back to A&E as no way could I do the walk back!  The stroke nurse told me that they suspected a migraine, but I was to report back the next day to rule out a T.I.A. (mini-stroke).  They were magnificent – all that was done in less than three hours!

I was told to come back the next day for an MRI on my brain just to be double sure nothing was wrong.  They warned it would be a long wait – I was to present at 10 am to the Stroke Unit and be prepared to wait most of the day as I would be fitted in when the MRI dept had a gap between their scheduled appointments and their emergencies.  I duly arrived at said unit and was amazed to find that I was expected and taken straight in to see a nurse and then the consultant.  I was then told I would have to wait about 1.5 hours for the scan but the nurse was working in the room (the old day room, now a Covid-safe meeting space) and was chatting to me. 

Then, for confidentiality while they saw another patient, I was moved over to the waiting room of the chronic pain unit and asked to wait there until it was time for my appointment at midday.  I managed a slow shuffle to the MRI unit (thankfully nowhere near as far as the Eye Clinic!) and after a short wait I was placed in the machine and scanned. I’ve had several of these before and it is really not as bad as you expect.  It’s very noisy and quite hot, but strangely relaxing.  I nearly nodded off!

I was then sent back to wait again and so I settled in the lovely courtyard garden on a wet bench, where the nurse immediately came to see me in order to apologise that the consultant was in a meeting and would see me as soon as it was over.  Having had some experience of meetings at work I settled in for a long wait!  I had two books plus a packed lunch, which they had suggested I bring.  I sat in the lovely courtyard garden, the sun came out and it was really toasty out there.  I was just thinking about taking off my shoes and socks and really relaxing when the young doctor from earlier reappeared.  Turns out he is the consultant (they really do look young these days…) and told me there was no sign of a stroke nor a TIA!  Hallelujah! 

I then reminded him I had HHT which can cause arterial malformations in the brain, which can be fatal.  I wanted to know if these would show on the MRI.  He confirmed that, yes it would show, but no I didn’t have any.  A double good news day!!  I had never thought I was concerned by the chance of that, but the relief I felt that day was immense so it must have concerned me in some deep, dark corner of my brain!  WSH were amazing, I was only there just over three hours again!

Therefore, it was only fair, when I got home, to write them another feedback email but this time praising them in the highest possible way!  Chapeau WSH!

I later found out that this type of migraine is know as a kaleidoscope migraine or a scintillating scotoma!