Boxing Day. Can I feel my face? No not really, and I feel weird.
So it goes something like this…
“Mum, will you take me to A&E I think I’m dying. I read online it might be a stroke.” As you can now tell, my rational brain had left the building 24 hours after said extreme headache. It didn’t take long.
“Don’t be ridiculous, OK you can go but I’m not staying with you because it’s Boxing Day” *n.b. Mum is a nurse. Nurse Mum did not think it was anything bad at this stage, and said daughter is prone to some exaggeration at best of times*
Goes to A&E. Probably after a cup of tea. Sits next to man who starts telling me he gets recurring headaches and apparently nobody takes him seriously but he comes to A&E all the time to try and resolve the issue. This was his 20th visit this year or something equally as ridiculous. Why he would go on Boxing Day was beyond me.
Queues are through the roof but I get seen pretty quickly and I’m triaged. I have a couple of what I now know to be neurological exams, eye tests and things like that. Nothing seemed untoward in those.
Very shortly I am speaking to a consultant. The consultant asked me if I’d been drinking heavily, kind of insulted – do I look pissed? I say no and he still asks me again! I’m not lying, I’ve been stone cold sober with my stupid numb face for days.
Said consultant with abysmal bedside manner then proceeds to tell me matter-of-factly whilst alone in the room with him that he believes this could be a sign of a brain tumour, and when pushed further by a now extremely anxious patient, a brain aneurysm.
I don’t know about you, but I didn’t have a clue what a brain aneurysm actually was so I was fully freaking out about the brain tumour I now had, oblivious to the fact that about 50% of people actually die from a ruptured aneurysm pretty swiftly. I was being sent for an urgent brain CT scan so they could see if there were signs of bleeding, but because the headache was over 24 hours prior to my arrival at A&E, there was a potential it wouldn’t show up. But hey, it would rule out a brain tumour.
Phone call to horrified Mum ensues and Mother is at A&E within rapid speeds.
Nurse Mum knows what a brain aneurysm is and her face said it all. I googled it. Fucking Hell, I am 100% dying, R.I.P me, say bye to the dogs. In the moment, it actually seemed absurd and almost comical because I didn’t really feel unwell or like I’d had a bleed on my brain. We kept telling ourselves that surely I was too well to have something like that? But a consultant said it, why would he think it? Maybe it was the brain tumour after all and I’d have a few months of my life left to do some fun things, complete on my flat, or mainly just spend the whole time in a giant panic attack worrying that I’m dying 🙂 (With hindsight I know brain tumours are not always bad and I have some context.)
Anyways it was soon time for my trip to radiology, I’m going in! CT me up.
At this point I did have a bed in A&E, lucky me. When I returned I got the keep the bed for a few hours, but then in classic NHS cuts style I was sent to wait in a random meeting room to try and sleep on a chair while waiting to hear my results. As time passed, and all the staff refused to give me diazepam because it could give them duff neurological results if I was drugged up, the panic started to fade by itself and life with my broken brain seemed like the new normal. It’s funny how quickly you can get used to something. As the hours went by and I realised I wasn’t dead yet, the aneurysm situation didn’t seem to quite check out. The tumour will be operable and I’ll be fine!
Results are in, it’s morning, we’ve been there all night and I’m finally given a bed. I’m told my brain looked ok but I would need a lumber puncture because this could show any bleeding or abnormalities in more detail. Again, I had no idea what this was.
I was then told I’d have the LP within the day and someone would come to see me. I had quite a few bloods taken too.
Hours and hours slip away, and boyfriend was now in attendance.
After a distressing day with the addition of some food that resembled a floating omelette… a large group of doctors now surrounded me. A senior consultant at the hospital and his junior doctor gang attentively listening to his every word. He said the LP was not needed as I was already distressed enough, and the A&E consultant should never have told me what he did. He continued on, my GP’s initial theory regarding it being a virus was the most likely culprit for the numb face. The headache was a migraine. He said it will go away on it’s own, and that I could go home. WTF?
Not the type of all-nighter I was after at Christmas.
Days passed and the lips were still feeling weird, and it was just one side. The right hand side. It felt like it was actually getting worse and spreading into my face. I thought maybe I’m just going mad?
You make a great hypothesis. I wonder how we could test this? With my first CIS episode (ADEM) the neurologist would not commit to how likely it would be that I would have another episode or go on to develop MS, no matter how I asked the question. He would say “Some people will never have anything like this again” and guided “go out there, live life, buy that house, continue dating etc”. I met my now husband a year after ADEM and remember saying “if it happens again it’s MS” and I have enjoyed 9 blissful years of no major events. After having ADEM and being aware that I did not have MS for those 9 years I did feel life is beautiful just as it is and would pray that I wouldn’t go on to develop MS. Still, however it seems MS has been doing something in the background and I received my diagnosis this year.
Agreed ignorance is bliss and maybe neurologists do this to allow us to consider and process the prospect of a terrifying disease at arms length.
Perhaps a doctor or neurologist may visit this blog one day and let us know 😉
There’s definitely pros and cons to it, isn’t there! They update the diagnostic criteria pretty regularly too, so things keep changing and it seems is now getting diagnosed sooner. The last updates were 2017 to the McDonald Criteria.