Cerebellar stroke: John's story

John, who had a stroke in 2000, is the founder of Stroke Survivors, a website and forum for people who have had a stroke, and in particular, people who have had cerebellar strokes. Here he tells his story and describes his life post-stroke.

January 2000: Stroke in hospital


On January 11th 2000 I went into my local hospital to have a water deprivation test for diabetes insipidus (which it turns out I don't have, but the symptoms I was experiencing, such as extreme thirst, indicated it was a possibility). The test was supposed to take about 10 hours but after about 4 hours the doctors stopped the test as I was getting distressed. I was in fact having a stroke.

The part of my brain affected was the left side of the Cerebellum, which controls balance and co-ordination (it was the left vertebral artery that was blocked). The last thing I remember was going to the hospital canteen for a slice of toast!

I was an HGV lorry driver for 10 years prior to having my stroke and luckily I was not driving at the time it happened.

TIA diagnosed as 'flu


A week previous to this I woke up one morning and found I could not walk and crawled to the bathroom where I was violently ill. I went to my GP and she put it down to gastric 'flu which I did not question as, at the time people were going down like flies with 'flu and viruses. I later realised that it was a Transient Ischaemic Attack or TIA - often called a "mini-stroke" - where the symptoms generally get better within about 24 hours.

If you or anyone you know suddenly lose the power of or understanding of speech, visual disturbances or loss of balance or any other unexpected problem you should consult your doctor without delay. Better to be safe than sorry!

Hydrocephalus and other complications


After two days I was transferred to the Neurocritical Care Unit in a different hospital. I was given a CT scan followed by an MRI scan (which apparently gives better pictures). After this it was apparent that my condition was complicated by Hydrocephalus (a build-up of fluid in the brain). The doctors then decided that I was going to need surgery if I was to survive and I had a shunt fitted during the early hours.

I was then told I had a chest infection and was put on a ventilator as I could not breathe for myself. My family were then told that I was going to have an operation called a Tracheotomy.

The next day it was decided that the operation was not necessary as my breathing had improved. By this time I had that many tubes connected to me, I was beginning to resemble a bowl of spaghetti.

Road to recovery and my 40th birthday


I remained in this hospital until 27th January when I was transferred back to a local hospital. I remained there for a further five weeks and was given intensive physiotherapy five days a week, to help my balance and co-ordination. I gradually put back on the weight I had lost (2½ Stones) and started the long road to recovery.

By a cruel twist of fate my stroke happened one month before my 40th birthday (which somewhat changed my celebration plans) and I was released for "just a couple of hours Mr D'Arcy and don't have too much to drink", to allow me to celebrate my birthday. Four days later on the 8th February I was yet again released for a few hours to celebrate my 14th wedding anniversary (and another four pack of bitter!)

DVT, physiotherapy and discharge from hospital


On readmission to hospital I was having problems with my left leg; it was swollen and very painful. The next day I had an ultrasound scan on my leg and it was found that I had a blood clot (DVT) in my left thigh, I was immediately given an injection of Heparin (a drug used to thin the blood) and afterwards I was put on a course of Warfarin tablets (Warfarin is another drug that thins the blood.) The physiotherapy continued and I was finally discharged on March 2nd.

After discharge from hospital I continued physiotherapy twice a week for six months which consisted of riding an exercise cycle, attempting (pitifully) to juggle, skipping and generally staggering around the gym.

10 years on: when one door closes another opens


Now, 10 years later I look upon life with a different attitude, I sometimes stagger when I walk, I have poor co-ordination and my speech is sometimes slurred especially when I am tired, I will never win any awards for typing but I guess you get out what you put in.

They say that when one door closes another opens. I have for a number of years wanted to work in IT and because of my stroke I lost my HGV licence. My local Jobcentre found me work based training in Web Development. After 10 years of recovery and 5 house moves, I now work full time as a Web Developer.

Further information



If you have any questions about stroke or any other neurological topic, call the Brain and Spine Helpline on 0808 808 1000 or email helpline@brainandspine.org.uk.

You may also find these links useful:

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