I wrote this about 3 weeks after my NASAH as I wanted to update friends and family on what we were going through; I did put it on social media and at the time it helped a lot, ensuring that lots of well-meaning 'well wishers' stopped deluging me and my wife with questions, as it was all there in one piece for them to read.
January 3, 2017
Just run through it…the road to recovery after NASAH – Part 1.
December 13th 2016 started much like the rest of December had. Up early, running gear on and out with the dogs for the pre-planned Marcothon 5k route. I was mildly hungover and trudged around, up the short slope of Ancrehill and down the other side. I stumbled at the gate, went over on my ankle and swore. A couple of other dog walkers loomed out of the darkness as I mumbled a greeting. At that point I realised I had a massive headache. Those in the medical know would call it a ‘thunderclap’ headache, in fact. I just thought I was really dehydrated, snapped my habitual morning run pic (above) and stumbled on the mile or so home.
I was feeling ropey and struggled with my keys. I lurched in the house, ran to the back door and vomited violently.
I felt terrible, but I had stuff to do, kids to sort and work appointments to attend. I spent the next 5 days taking painkillers, suffering a killer headache, being vague and having serious aches in my spine. I did the meningitis self-tests and got on with life, thinking I had some weird kind of flu. I even took the kids to a party and did the cha-cha slide. By Sunday evening I thought I should probably see a doctor. Monday morning found me struggling to balance and with a strange hearing sensation. An early trip to the GP and things started to get serious.
The GP was confused by my delay in seeking help, but his checklists pointed to a possible brain haemorrhage. Unlikely, but needed to be checked out on the off-chance. He had an amusing anecdote about a friend of his who had a similar issue, the punchline was ‘she died, of course’. He apologised, but he’d got his point across. I’m not going to detail all the emotional interactions that occurred, but people might find the following processes interesting. Suffice it to say, I began to get scared.
Anyhow, we hot-footed it to Neville Hall Hospital and registered at the Emergency Assessment Unit. It’s a bit like A+E but without so many drunk people, as people usually come from their GP first. Apart from the usual obs and tests, I was booked for a CT scan toute suite. Otherwise, it was a case of sit and wait. It was busy, a couple of people said they had spent many hours there the previous day too, which didn’t bode well.
Nonetheless, it didn’t take long for the nurse to call me and up I went. Off with the jewellery and into the scan tube. The process was simple, then I was asked to wander back downstairs. At this point, the headaches were massive and I remained ‘2 pint drunk’. The scan came back negative, but I was told a lumbar puncture would confirm that. Not good. I was nervous, but actually the puncture itself was painless, done brilliantly by a very kind nursing team. Their reaction was less reassuring, as they told me they could see blood in the fluid, indicating a bleed. Not good x2.
I was still wandering around aimlessly or sitting and waiting. The doctor said the scan had identified a cyst but they weren’t sure if it was relevant to my symptoms. I went up for a second scan, this time with dye injected into my brain, via my arm. The scan was simple enough, the dye made it feel like I had wet myself, as they had warned. Hey ho. I was told the scan results would be sent to Australia for scrutiny, which was fairly weird.
At this point, the doctor found me a bed and I settled down, with a plate of potato croquettes and peas. The results came back, no bleed was identified, but they had found a cyst near my left temple. The doctor was guessing that the cyst had ruptured, and we had a chat about the likely options. Either they’d drill in and remove the cyst, or go in via an artery and fill it with wire to reduce the risk of further ruptures. She made it clear that she wasn’t a neurologist, though.
The blood in the spinal fluid still indicated that I had a bleed of some kind, so I was waiting for a bed in the University Hospital Wales, aka the Heath. I was woken at 0200 to be told I was nil by mouth, waiting for a bed and probable brain surgery. Wow. Tuesday went by, still feeling drunk, on codeine and no food or drink, shuffling around. By 1600 there was still no space in the Heath so I had some veggie lasagne and went to the toilet.
At 1700 a new nurse turned up and started doing new obs, apologising for the repetition. I noted that this was the first time and she looked panicked. Suddenly, I was on complete bed rest and told to keep my head no higher than 30 degrees. Someone had missed some instructions from the Heath, as a suspected haemorrhage case I should have been in bed since hour one. I was also put on Nimodopine to reduce the damage of the bleed. The main issue to all this was having to urinate whilst lying down. If you’ve ever had a massive hangover and couldn’t be bothered to get to the toilet, then the cardboard vase things they give you give a sweet if somewhat lazy release.
Friends and family had mobilised by then, in fact had mobilised since we first had to head to Neville Hall hospital; no detail here but people went beyond the call of duty and made sure that my family and I had every kind of support we needed, which as the patient was extremely reassuring, and meant I could concentrate on getting myself sorted. Of course, my wife had to just get through it whilst holding it all together for me. I fell into a troubled sleep, woken every hour by kind nurses or healthcare assistants for obs.
I could read and use my phone, but it did make my head hurt a bit, so I tried not to do it for too long. At 2300 on the Tuesday I was woken and told there was a bed in the Heath, so I gathered my gear, put my shoes on and waited for the ambulance. By 0000 I took my shoes back off and went to sleep.
At about 0200 the ambulance crew came and I was ‘blue lighted’ from Abergavenny to the Heath. Ambulances go very fast and I felt a bit sick. Nonetheless, I got to ward T4, extra care neurological ward at the Heath in good time. The nurses were again lovely, great bedside manner and extremely professional. It was obvious that the specialist level of care had increased massively. I slept, with hourly obs, until about 0700 when I got to speak to a couple of senior doctors, presumably neurosurgeons.
Essentially, they were concerned that I’d had a large bleed and may have another one. The cyst was a side-issue, of no concern at this point. The CT scan had not found the source of the bleed, but to identify the source and rule out an aneurysm (a bulging blood vessel ready to pop) they needed to do another imaging scan with rather serious side issues. It was clearly explained to me what a DSA (digital subtraction angiogram) was.
They’d cut into my femoral artery in my groin, insert a tube up to my neck, pump dye into my brain and take a number of pictures. The dye highlights the blood vessels and any bulge or rupture will show up. On the down side, there was a 0.5% chance of getting a stroke as well as risk of allergic reaction or kidney damage. Pardon the pun, but it was a no-brainer. I already had a brain bleed, exact source unknown, that could kill me. I needed to know if I had a weakness or not, so I signed the consent form.
I waited for space on the DSA machine and got on with not eating, taking codeine and being washed in bed by nice female Spanish and Welsh nurses. Really, I didn’t care who washed me, I was preoccupied with the stroke risk, aneurysm etc. I was 40 years old, had 2 small children, a sweet wife and liked to run up hills and here I was looking at potentially life-changing conditions. By the afternoon I’d had my wife and my Bro visit. I met the DSA team, a great German nurse prepped me and gave me a no-nonsense run through of what was going to happen. I had full confidence in the team, everyone seemed to know what they were doing and I just tried to relax.
The surgeon put anaesthetic into my groin and all was well. I didn’t feel the artery being punctured but I did feel an amount of blood going down my leg. Inserting the tube was horrible, no two ways about it, and seeing the bruising 2 weeks later I can see why. It really, really hurt but the surgeon was quick.
I felt no more pain.
There was a massive TV screen showing my skull in x-ray form. I moved my jaw and sure enough, skeletor on the screen did the same. That was cool and made me very happy. I remained still when required and experienced fractal firework light shows when the dye was pumping. The doc took about 10 pix and whipped the tube out. He held my artery shut for about 2 minutes and that was that, sealed. He told me he’d need more time to study the pix, but could see nothing terrible, which was reassuring. I’d also not suffered anything bad from the scan, save a weird electrical shock in my arm when he was removing the tube.
I went back to the ward and had to lay flat to let the artery heal. They’d sourced vegan sausages and beans, so my wife spoon fed me, a bit weird but I was really hungry by then. I dunno what they were but they gave me massive stomach cramps all night. I needed to defecate, but that’s hard to do when you are exhausted, constipated and have to go into a cardboard bowl whilst lying flat. I tried, but sadly nothing emerged and I remained bloated.
I had toast for breakfast on Thursday and the blessed tea, with soya milk, that had kept me going throughout, when I wasn’t nil by mouth. I heard nothing until about midday when a junior doctor said I could go home! The scan was clear, they would see me as an outpatient for the cyst, but otherwise please leave.
Alas, it turned out to be a bit more complicated. I walked to the toilet for a failed trip. This led to me vomiting everything back up, which in turn led to concern from the nursing staff. Constipation and vomiting mean straining, which is not good with brain haemorrhages. I was banged up with some morphine and anti-sickness stuff, which turned me into a dreamy zombie. I was moved to a side ward where my boss visited me. I couldn’t really speak and my brain was drifting all over the place.
Unfortunately, that’s when the kids first came to see me, and looked really freaked out. I got through the visit but it was not good. Thankfully, after they left I slept for a bit and managed to defecate. I was moved again in the night to a lesser-care ward, and constipation was over! Result, I knew then that I’d be home for Christmas.
I had, and still have, a NASAH. A non-aneurysm, sub-arachnoid haemorrhage. They think a small blood vessel in the venous side ruptured, releasing some blood into the layers of my brain and spinal fluid. Hence the headaches, spine ache and general bumbling around. There should not be any great lasting damage. Had it been an artery then the consequences would have been very different. As it is it, I just need to sleep, rest and stay stress free for as long as I can, until the blood is reabsorbed. Hopefully we are talking weeks, not months. As for the cyst, we shall wait and see.