Jargon

[Mich-mm]

A fellow aneurysm survivor recently told me I should offer stroke survivors help to understand the complex terminology that medics use. i will start us off with some terms doctors have used with me during my stroke journey:

Hydrocephalus -the build up of cerebrospinal spinal fluid (CSF). The fluid that the brain sits in. An increase in CSF causes pressure to build up in the skull and can lead to cognitive decline.

Aneurysm-a weakness in a blood vessel wall that balloons and subsequently bursts.

Haemorrhagic stroke vs.ischaemic stroke the former is due to a bleed in the brain and the latter is due to a clot, but both lead to blood supply being cut off to part of the brain leading to neurones(nerve cells dying.

Contralateral one hemisphere of the brain controls the opposite side of the body.so for example I had a right side haemorragic stroke and my left side was therefore affected leaving me in a state of hemi-paresis on that side.

If any of you have felt doctors HCAs medics etc. Have blinded you with science i’d be happy to explain terminology used, just alert me using the @ symbol and my username. I have a degree in biological science and was a chemistry and biology teacher for 10 years, so in effect this is second nature to me. I don’t want any of you to feel like you are in the dark because terminology that we don’t use in everyday life wasn’t used.

Tracheostomy a tube-like device that is passed through an incision made through the neck directly into the trachea (wind pipe) many of us who have had a tracheostomy fitted to aid our breathing can’t talk because our vocal cords are cut off from air flow. There is often no physiological reason why we can’t speak it’s simply down to disuse.

PEG percutaneous Endoscopic Gastrostomy tube a tube that goes through the abdomen wall directly into the stomach. allowing you to be fed without actually eating and therefore reducing the risk of aspiration (chocking, ‘food going the wrong way’

BBS buried bumper syndrome, the disc that stabalises the tube in place becomes buried in the stomach lining causing issues with the effective delivery of nutrients.

(EVD)External Ventricular Drain, a temporary medical device used to drain excess cerebrospinal fluid (CSF) from the brain. This is often done to relieve pressure

CSF- cerebrospinal fluid

Speech ataxia is the difficulty in speaking caused by a neurological condition that affects coordination and balance.

[Mrs5K]

Thank you @Mich-mm. I have leant something today. The drs do tend to use medical terms that mean nothing to most of us. I have lost count of the times I have had to get drs letters explainesd to me.

[AliceP]

Hi @Mich-mm

This is all so very interesting to me.

My aneurysm is in my left side communicating artery.

I sometimes get frustrated when trying to explain to people that I still have my aneurysm, only it’s coiled and has a stent in it now.

I’m still waiting on my results from my last brain MRI scan that I had a couple of weeks ago.

Wishing you a good week ahead

Alice

[Trishk]

Thanks so much for your post. Great help for me. It would also be nice, if others who post in this forum could explain when they use letters, such as the HCA you used in your post. I’m assuming HC is Health Care but what is the A for? And as I’ve seen posts by Americans, it may be that they have different terminology or letter “abbreviations” so maybe they could elaborate as well.

[Mich-mm]

Sorry @Trishk HCAis indeed health care A is Assistant so HCA is in effect a carer And hasn’t done any formal medical training

[Mich-mm]

I’m so sorry there’s a type of stroke i didn’t define

Subarachnoid. This s the space between the ‘skin’ or meninges of the brain, and the skull it is filled with cerebospinal fluid (CSF).

[ManjiB]

Hi Trish - you have made an excellent point and your request is not at all unreasonable. In an ideal world people would go and explain any jargon or abbreviations they use, but alas, it is unlikely to happen. The reason for this is that for some stroke survivors it is actually difficult to even type the messages. In addition, sometimes we are in autopilot and don’t stop to think and even the medical professionals slip into this.

I remember we had a discussion on this back in April.

Plain English please

I have been on this forum since last September when I had my stroke , I find it useful and sometimes humbling to read of other peoples experiences, but I have one major request, please when people’s experiences and events are reported, could you please use plain English, I for one don’t understand what is being described due to my lack of understanding medical terms,

You might want to try to request this by creating a new post and see if others will join in supporting this request. I think Michelle @Mich-mm has made a great start and perhaps between you you can come up with a way of getting this message to a wider audience.

The difficulty we face is addressing a wider audience.

Michelle’s post has been viewed 75 times as at the time of writing and a high proportion of that may have been read before your request was added.

If my investigation is good then there are nearly 4500 members but we don’t know how many are active as at now.

So even if 1000 were active, so far only 75/1000 are reading this which equates to 7.5% which is not very high in this context.

I am sorry that I am painting a bleak picture
I wish there was something I could think of to help with this cause.

I have a feeling Michelle @Mich-mm might come up with something - she did come up with the jargon buster after all

As a footnote, Trish, I should say you did very well in working out HC was Health Care and then the A was something you might have had a stab at guessing. But whenever, I find myself troubled in this way, I go to our trusty friend “Google” and ask “What does HCA” stand for and more often than not, it will help.

Here’s one I did earlier …

Maybe I was lucky on this occasion, but usually it helps.

Lastly and this is an absolute sure fire thing and that is just reply to the poster and say “Hey Michelle, What does the A in HCA stand for or what does HCA stand for?”, or even as you did make a plea as you did and that which got the response you wanted (and more - my rather longer than needed ramble )

@Trishk

It would also be nice, if others who post in this forum could explain when they use letters, such as the HCA you used in your post.

I am sorry, but I just can’t help rambling on and on and on and on. I guess I’m a born rambler

[Mich-mm]

@ManjiB you are indeed a rambler and to make thepoint you and @Trishk are making

W.A.N.D.E.R.E.R. (Walks, Ambles, Navigates, Discovers, Explores, Roams, Reaches, and Resides) to describe a person who rambles, or H.E.R.E.S.Y. (Hikes, Explores, Rambles, Enjoys, Strolls, and yearns!!!