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Cerebellar strokes update

Roson March 20, 2018

4 Comments

I know I speak a lot about my cerebellar stroke but, like most of you, I am trying to find a positive out of what I suffered. Not being one to just quietly melt into the background when something irks me, I have decided that I will try to pass on the message that 'vertigo' does not automatically mean a problem with the inner ear . . . or too much 'fun' the night before. As such, I have written to the local hospital that first treated me and I was told, yesterday, that my concerns had been passed on to the Emergency Department for discussion at the monthly meetings. I hope that some good comes out of that. Next I decided to contact Ambulance NSW to inform them of the symptoms of cerebellar stroke and the fact that 'vertigo' is merely a symptom not a diagnosis. I am yet to hear what they will do. I have always wondered if cerebellar strokes are really that rare given that many are misdiagnosed or even undiagnosed (depending on their severity). I also found it interesting that a recent article (dated March 2018) outlining what a cerebellar stroke is had these types of strokes as occurring in 10% of the population; past data suggested that only 3% of strokes were cerebellar strokes. Maybe the medical profession is beginning to realise that cerebellar strokes are more prevalent than they once thought. If this is the case, one can but hope that it will lead to more research; especially regarding after care.

4 Responses

Ros

20/03/2018 22:38

Saw a new post online regarding cerebellar strokes. it is very interesting in that it actually addresses some of the lesser known after effects of cerebellar strokes. https://www.flintrehab.com/2018/cerebellar-stroke-recovery-treatment/ Worth a look.

Dee

22/03/2018 06:45

Sounds as though we both went through the same thing!! NSW Ambulance refused to take me to hospital as they were convinced I only had vertigo (self inflicted they assumed). I'm currently obtaining ambulance records (via a lawyer) and my aim is to educate them so it never happens again.

Ros

22/03/2018 21:54

Hi Danielle! Sorry to hear that you were refused transport. If you read my "Good News Week" blog you'll see that I have had an excellent result from my local Ambulance NSW representative. I am surprised that you needed a lawyer to obtain your ambulance records. I received a copy of my mother's record a couple of years ago as we had an issue with Ambulance NSW that needed sorting; I used the freedom of information route. Free and much less hassle. I believe that all people involved in my care from start to finish did the best they could under the circumstances; such as, protocol limitations and lack of knowledge regarding cerebellar strokes. I also believe that it is up to those of us who have been affected by cerebellar stroke to speak out or nothing will change.

For example: I had an appointment with my optometrist this week to make sure that my vision and eyes were unaffected as I had severe nystagmus. I received a clean bill of health, thank goodness - both visually and from a neurological point of view (excuse the pun) as he also tested for that. Anyway, after all the testing had finished we sat and talked about what had happened to me. My optometrist was gobsmacked! He said he sees at least one patient a week who presents with the symptom of vertigo. He said, in future, that after hearing my story that he would advise these patients to see their doctor for further testing especially of the cerebellum. So, I feel quite chuffed as I always believe that everything happens for a reason. Therefore, my cerebellar stroke must have happened so I can get the word out and help others.

All the best with your recovery and your 'discussions' with Ambulance NSW.

Ros.

Ian

25/06/2019 07:35

GP thought it was vertigo as well. Then two days later back to GP with headache and vertigo and then my wife drove me to emergency and I had a cerebellum stroke. I think it may be hard to diagnose and occurs in about 2 per cent of stroke victims ???

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