Acquired complications

[Rups]

It’s been a wee while since I’ve thought to write an actual topic. We had Pontwander leave the forum which was a bit sad for me, but I hope he may check in again just to tell us he’s doing splendidly. I’ve also been just acting like a bee going from flower to flower collecting nectar. So, one task to another. The purpose of this post is acquired complications. As post stroke survivors we are told that recovery is from the damage to our brain, however, that damage affects other parts of the body, including the central nervous system, immune system, the gut, oculomotor system, vestibular system, lymphatic system, and others I don’t know the names of.

My big beef with the NHS is that acquired conditions are not redressed after stroke. That means we are not told of potentialities that may occur when the brain can’t function as it would normally. Keeping in mind that the brain is the HQ for the rest of the body as far as policing its condition goes. Future problems do arise.

If you have a second TIA or stroke after stroke it may not be because of the original reasons, but because an acquired condition has occurred. It frustrates me to no end that this is not being part of the post stroke banter. Who here has heard of hydrocephalus? Any takers? Hydrocephalus causes fluid build-up in the ventricles of the brain, it also has a symptom of shuffling, or hypometria. It creates pressure in the brain. I was shuffling for a year, one whole year after stroke. Walking like I was a very old manservant from a 1960’s madcap film. “You rang?” I picked up through my own research that this might be hydrocephalus, and brought it to the attention of my stroke consultant. He confirmed it might be. I had a second MRI because of this. Right. So. Or in line with Mrs Doyle from Father Ted, “Right, so.” Which is probably better English.

It turned it out it wasn’t, but I had tracked down hydrocephalus, and brought it to the attention of our busy NHS staff. We are all facing a long-term situation where acquired conditions, all recognised independently in various medical journals are not being compiled in one consistent document for those post stroke or TIA. This is very burdening on the entire health system. Not to mention there are some conditions one may be prone to that are exacerbated by lack of brain control in that particular area.

[Loshy]

@Rups morning and thank you. Great read and makes lots of sense. I can relate to some of it. Yes I felt sad when pontwander left too. Best regards, Loraine

[JuliaH]

Morning @Rups. I feel like we have to take on the job of a compiler, detective, and investigator at the same time as living with the ongoing ramifications of having a brain injury. It then seems up to us to try and work out how to manage day to day existence after unearthing information. The NHS post stroke care has been entirely absent for me. I have learnt more from this forum. The only post discharge appointment I’ve had was in a “local” ( 20 miles away) ambulatory care department, where you go if you are having a TIA to try and avoid admitting you and treat you quickly. My consultation took place in a bedded hospital room with a consultant specialising in geriatric medicine. Being left waiting in this hospital room had me pacing the floor with anxiety. I had just spent 7 weeks in a hospital ( where my other injuries took centre stage) and was traumatised by the experience. She was very pleasant, we had a chat, basically the upshot was I’d had a stroke, they didn’t think I was at risk of another one, the level of my future recovery was uncertain. The end. No further input, other than ongoing opthalmology due to my damaged occulomotor nerve. That has been also protracted with poor and misleading information. Currently I am waiting to see if there has been any improvement since my last visit, as if there has I start a 6 month further wait before they will try anything to align my eyes. The best I can hope for is single vision looking ahead and down. This information has only been drip fed to me in the last 3 months. Add to this all the departments involved in my care post accident ( neurosurgery, GI, nephrology, orthopaedics, rehabilitation -a joke and misnomer) my poor damaged brain has it’s work cut out. These departments do not speak to each other and I have to play go-between. The concept of neuro fatigue which I only learnt about from visiting this forum has been a game changer for me, learning that there is a reason for feeling the way I do and working out how to manage it. As my balance and coordination have been affected it is hard to separate the cause as I have to rely on patching one eye so I believe some of that is due to the stroke but some is acquired due to my vision. Sorry for the rant but the lack of joined up care is something I feel strongly about. Stroke survivors need to buff up their resilience in the face of this onslaught. Julia

[Loshy]

@JuliaH totally agree. They don’t know what to do with us. They follow their protocol and we are all individually unique so they should adapt to our needs. Totally useless is how I feel about my care. Keep smiling Loraine x

[Mahoney]

Totally agree Julia, I had no aftercare whatsoever, no physio, nothing, once I left the hospital, only a 6 week follow up appointment post stroke, that turned out to be a telephone chat 8 weeks later, during which the Stoke Consultant discharged me back to the care of my GP, who doesn’t appear to recognise neuro fatigue as a symptom following a stroke.

Wishing you all the very best, hope you receive good news at the ophthalmologist appointment.

Stay strong, stay positive, keep smiling, take care

[Mahoney]

Hi Rups, it is indeed a worry, I’ve often wondered if the stroke would lead to some other complication(s) along the way in the future, I try to put it out of my mind as worrying about ‘what ifs’ is no good for my anxiety.

You are correct, in my opinion, that the NHS doesn’t address or even contemplate acquired complications when tackling stroke aftercare.

I had heard of hydrocephalus, I’d also read it could be a post stroke complication.

Thanks, for another thought provoking topic.

Best wishes

[Rups]

I know we do @Loshy, I just hope he pops in with grand news. I get very quickly attached to people, it’s not for my own good but I’m a good old humanist at heart. It’s probably why I have a misanthropic shell to cover any damage to myself should I relax it.

[Rups]

@JuliaH, my stroke consultant is a specialist in geriatric care. I was probably a novelty for him, he was very good, but I sensed he was on his own. You are right, these departments only communicate via notes. Notes don’t equate to precise prognosis. I don’t like feeling as if I am out for the count because I have had a stroke. Had I broken my leg, I would still present a sober client but, because I wonder if I had incurred brain damage, there might be some kind of fundamental primordial fear of what that unknown may mean for those who are attempting to care for the condition. In other words, “My healthy brain is trying to comprehend what it must be to have a damaged brain”.

[Rups]

@Mahoney, “Your GP”, “My GP”, those phrases are redundant. No GP is put on high alert for post stroke complications, nor do I believe they would bother finding out if there might be conditions that potentially have arisen via the stroke. Sometimes, I wonder if it is patient care or patient couldn’t care less. I know I sound harsh in saying that, but “my” mental health GP didn’t bring up any potential cognitive problems associated through cerebellar stroke. I now know these from what I have dug up. I’m not being paid to research my medical condition, great if I was, might lift a few financial burdens and help with easing the strain of recovery, progress or rebuilding. If paid professionals aren’t listening, what are they being paid for?

It seems like every professional I speak to, I am filling in the gaps to their knowledge, and I am unsure they will remember or even think about what I have said, or even care. I was a teacher once, for about fifteen years, in front of a classroom full of eager learners. I came to the realisation after several years that I was also just a student who progressed my knowledge through teaching others. I think this principle is missing in our healthcare system.

I said to to my GP, “I’ve had a cerebellar stroke plus six TIAs.” He said, “The cerebellum? At the back?” Yes, it is at the back of the brain. The nose it at the front of the face. The ears at the side of the head. And the I believe the hair resides (or doesn’t) at the top of the cranium. However, top marks if you get the cerebellum at the back. “I’ve started, so I’ll finish …” I have a very acerbic wit when it comes to these kinds of things, so excuse my reckless use of sarcasm.