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Passing on Information About Cerebellar Strokes

Roson March 14, 2018

6 Comments

Well, as you may already be aware, it is very nearly six months since my cerebellar stroke (with a tiny parietal lobe stroke thrown in for good measure). You will also know (if you have read my 'blogs') that I have been having physio and hydro therapy sessions, plus exercise bike time to aid in my recovery. While my physio treats me she is also teaching a trainee. Today she asked me to tell the trainee what had happened to me - the whole thing; misdiagnosis, etc. After I had finished, my physio said that she wanted the trainee to know about my experience so he could learn some of the signs to look for regarding cerebellar strokes. So, I went on to explain some of the things I have learnt about cerebellar strokes and the easiest way to determine that it is a stroke and not 'vertigo.' The physio is astounded that in her six years of study she was NEVER told about cerebellar strokes - let alone the symptoms of one. The more I speak to those in the medical profession the more I realise that, although research is being conducted into strokes in general, the rarer ones do not garner as much funding nor mention. Maybe that was the reason for my cerebellar stroke - to make this rare stroke known and help those who suffer one gain the medical attention they need quickly rather than constantly being misdiagnosed and treated as though they are being melodramatic!

6 Responses

Toni

15/03/2018 00:10

Hi Ros,
Interestingly I had the same conversation with my physio last week. I was telling her about the video you shared (I think it was you) and how it was explained taht strokes of the cerebellum affect the same isde. I often get told from a vareity of medical staff, as well as 'normal' people, I couldn't have had a left sided stroke if I experienced weakness in my left side. Her explanation was in uni etc they teach to what happens in 80 -90 percent of cases and don;t go through the 'rarer' cases.
Interestingly the slides we're provided with for Strokesafe presentations only highlight posture, balance & coordination as being affected by a cerebellum stroke.
Toni

Ros

15/03/2018 01:01

Hi Toni! Yes, it was me who posted the video link; although Diana provided a direct link after reading my 'post.' I have regular visits to my physio and I have decided to provide her with the link as well some other information I have collected regarding cerebellar strokes. I truly believe that it is about time the medical profession realised that not all strokes fit the FAST test nor follow the well known pattern of what a stroke should be. Many times since my cerebellar stroke people have commented that I 'look good' for having had a stroke. At the back of their minds they believe that I should have the usual after effects such as some paralysis on one side etc. As I don't overly display the accepted features of a stroke I must therefore not have had a very bad one.(When I am feeling like crap, as I have most of this week, such comments tend to piss me off - sorry about my language!) I have joined a Facebook page totally devoted to cerebellar strokes. Its members are from around the world and it is interesting to read how other countries react to/deal with cerebellar strokes.

The Stroke Foundation has placed on Facebook a request from a research group in Newcastle NSW for people who have had strokes to register for future research. I emailed the coordinator of this research group and explained the type of stroke I had had. In their reply I was informed that they would be happy to include me on the register but their research was not looking into cerebellar strokes rather the more common forms of stroke.

I have a suggestion: anyone who is looking at doing a PhD in the medical field should consider basing their thesis on cerebellar strokes. I can all but guarantee that your research will be one of a kind; at least in Australia - a criteria for PhD's.

Ros.

Toni

15/03/2018 07:32

Ha ha Ros, you're comment re getting pissed off really resonated with me. I can look like I'm fully functioning and often get told how 'lucky' I am. I don;t mind so much if it's someone who knows the struggles I go through but when it's a stranger/vague acquaintance watch my hackles rise.
I did a strokesafe presentation this afternoon and one of the attendees mentioned she'd had a cerebellar stroke about 15 years ago and that it was misdiagnosed for a couple of weeks as vertigo. I told her how we'd started this discussion today and she was shocked that such misdiagnosis still happens. On the flip side there was another lady who'd had a stroke within the last year and received the clot busting medication and was left with minimal side effects.

As I said to them, while we have to laud the advances made in diagnosis and treatment the more research that gets done the better as there is still so much unknown and that the knowledge that is known needs to be circulated amongst all medical professions.
Hopefully our voices will add to this sharing
Toni

Ros

24/03/2018 21:41

I am one of those annoying people who, when they get a bee in their bonnet, keep going until something is done. My husband says I'm a pain in the arse! Lol! Yeah, well, take note the first time and I'll back off :-D

Carol

24/03/2018 06:15

Thank you Ros for your comments. I'm a newly diagnosed survivor of a cerebellar stroke. I was not impressed when someone looked me up and down and said "You don't look like you've had a stroke" Maybe not, but then no one can tell by looking at them that someone is deaf either! It has been a struggle to get my mind around this new diagnosis. Like you I often feel crap. And so tired. How long does the tiredness last?

Ros

24/03/2018 21:39

Hi Carol. Yes, it is tiring having people say you "look alright" - meaning, you don't look like you've had a stroke. As I am hearing impaired I am used to this kind of reaction. Most people I meet/know aren't aware of my hearing impairment as I can read lips fairly well after a lifetime of having to. Now I am in the situation of having another 'silent' disability. oh well, shit happens (excuse my language). As for the tiredness - there are many blogs and forums about this after effect, as well as information in the "Strokesaurus." I am now exactly 6 months post-stroke and the fatigue is the one aspect of my recovery that still brings me to my knees! It can come on without warning and for no apparent reason; although, if I have a full day or any sort of stress the fatigue is worse. I am hoping that it will gradually get less as time goes on but one never knows. I have learnt it is easier to 'listen' to my body and just take time out when it wants me to. All the best in your recovery.

Ros.

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