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The girl who had worms in her brain: hospital diary

Written – as a record of my symptoms (for the doctors) – whilst being treated in the Royal London hospital, 2004. Gives a flavour of what it’s like to experience a mild brain injury. These are my own, unedited, words – as scribbled on the back of notes I’d been given about my condition.

After the diary entries are my (also scribbled) thoughts about brain surgery – the pros and cons of having the surgery tomorrow, in 10 days’ time, or never.

6 August, 2004

12:25  Lost my balance in the shower. Legs gave way. Had trouble putting a band in my hair and wrapping a towel round my head.

13:00  Couldn’t hold my knife when eating lunch. Kept dropping it. Keep dropping my pen. Hand keeps jerking – lasts about a minute a time. My bladder is leaking.

14:50  Frequently needing to go to the loo. Want to go again as soon as I’ve been.

19:00  The constant twitching of my left arm and hand is making it hard to do tasks like undoing my bra. I can’t keep my book open when I try to read.

7 August, 2004

07:30  My bicep hurts from the constant twitching. Having trouble managing to hold yoghurt pot and use the spoon. Head is foggy. I feel clear and normal for about two minutes after waking, then it all goes fuzzy. It feels like my head is bisected with a line running all the way from my forehead to the back of my skull. Feels strange, but not painful. My left leg is sometimes jerking violently. (Remember to mention the difficulty with abstract thought and decision making.)

12:50  Managed to grip the lunch tray OK and didn’t drop anything, but I kept dipping my finger in my orange juice.

20:30  Quite drowsy, and it’s harder than usual to do my crosswords. My blood pressure was high again (147/93).

8 August, 2004

00:30  Funny turn in the night. Awoke with my head feeling ‘fitty’ and my left side was numb. Left leg kept jerking violently. Lasted about an hour.

06:00  Left side still weak, but leg jerking not so bad. Blood pressure low again (98/58).

07:30  Ate breakfast ok, but there still feels like something wrong with my swallowing and I’m still dribbling a bit. Feels like a node in my throat moves to the left.

13:00  Very drowsy. Slept the past three hours. Dribbling. Left arm is very weak and can’t really use it. My right side is trembling too.

16:30  Felt an aura when I went to the loo. Finding it very hard to concentrate today. My head and posture are droopy. I keep telling myself to stand up straight.

9 August, 2004

07.30  Same problems with trying to hold things and eat. Still having trouble swallowing.

19:00  Hard to stop my head drooping. Dipping my fingers in my yoghurt again. It’s as though I can’t tell where things are – I go to scratch my nose and poke myself in the eye.

10 August, 2004

09:00  Took some rousing to wake me. Have been excep. sleepy last two days. Both hands are now jerking. I see a ‘silver lining’ around objects and flashes in my peripheral vision. It’s hard to read because the words jump about.

20:30  Co-ordination is still hard, but I managed to pull up my knickers and put a band in my hair better. Annoyed that I can’t hold my book. My hand falls away.

Thoughts about the good and bad of brain surgery

If I have it tomorrow…

Good – gets it over and done with. Prevents risk of further damage. I will be recovered, off drugs and back to work more quickly.

Bad – Is it too soon to make such a big decision? Could other parasites (not removed) cause problems? Should my swallowing problem be sorted out first?

If I have it in 10 days…

Good – It will give Mr Wadley more time to run tests on me. I will get time to think about it. Mr Wadley can get opinion from the hospital for tropical medicine.

Bad – I could deteriorate, which might not be nice. They might have trouble fitting me in.

If they don’t operate…

Good – the swelling might go down on its own.

Bad – I could deteriorate or the fits could get worse. I could have worse side effects from the drugs. Will I feel well enough to work properly?


I’m happy to report that they decided against brain surgery – it wasn’t needed. It’s interesting to remember how close it came though – ie ‘tomorrow’. It must have been difficult for me to try to make such a decision – whether or not to have my skull opened the next day – on my own, and with my decision-making abilities seriously impaired!  Still, would’ve left a cool scar.

I’m also happy to report that I hardly ever poke myself in the eye these days. And can mostly eat yoghurt without sticking my fingers in it. 🙂



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