My Story: Growing Up With Hydrocephalus 

I first saw pictures of myself as a baby when I was about 7 years old. My mum had this album she kept for me which was really called a Baby Book and had photos, a lock of my hair and information on my birth weight, place of birth and what milestones I’d reached. I was fascinated by this book and asked to keep it in my room as soon as I got my own one. If you ask me what my memories of growing up with hydrocephalus were, I’d say the memories were  good and bad. Here are some of the things I remember: 

Having trouble getting comfortable to go to sleep because of the height/ type of pillow I used. Always liking to sleep on my back and never on my sides as that would make me feel nauseous. I felt like I was sinking into the pillow too much and  would start coughing a lot. 

Waking up in the night/ dawn hours  during a flare up with the worst headache as well as vomiting. 

Feeling nausea when the weather changed for the worse because of the change in air pressure. This is very common in many people with hydrocephalus. 

Feeling embarrassed when my form tutors ar secondary school suggested I have help to organise my schoolwork and notes to aid with memory problems caused by hydrovephalus. Deep down,  I felt like they were saying I was stupid. 

The way I hated the changing rooms and was always dreading people looking at my scars 

Hairdressers appointments, for the same reason 

The medicine trolley at the John Radcliffe Hospital in  Oxford and having to swallow disgusting thick sour orange medicine before I swallowed a nice one that tasted like bananas 

Mum driving me to hospital at either the Radcliffe Infirnary in Oxford or the JR. 

Keeping a green surgical hat to use as dressing up clothes

Having an NG tube multiple times  and wondering if I’d eat food again  

Asking the doctors and nurses what they were going to do to me and not settling for a quick explanation. I got very nervous and wanted reassurance. 

Crying during CTs and MRIs. When I was younger I didn’t realise these tests were actually causing my to feel claustrophobia. I now realise this and choose to be sedated via general anaesthetic. 

My first,  (and so far only) Intracranial Pressure Monitoring (ICP)  session- an operation then 24 hours lying on my back in a hospital bed with a drip in my arm, a blood pressure cuff on my arm which inflated every so often and machines bleeping. I was 11 years old but have deep and permanent physical scarring from that. 

Mum sleeping on a camping bed next to my hospital one every time I was admitted to hospital. 

Wondering if I’d ever start secondary school or of my education was over because of my disabilities. 

My first bite of real food after having being drip and tube fed after a shunt op. I clearly remember a nurse coming in and asking me what I wanted. I said a marmite sandwich on toast. That’s still one of my favourite things for breakfast! 

The way there was always fresh fruit and Robinson’s orange squash on my hospital bedside cabinet thanks to mum 

How dizzy I felt during the recovery stages. of operations and also the ICP monitoring, but being the brave person I am, I didn’t complain. I felt like I was on a fairground ride and like tbe bed was turning in circles! 

I’ve had my ups and downs with hydrocephalus and some situations still affect me like weather and pressure changes and sleeping posture. I’ve had a viscoelastic (“memory foam”) pillow for years now and it’s been one of the best buys ever- I have two in fact so I’ll always have a spare. 

I still get headaches but they are from fatigue and my overactive muscles when I move   rather than being a symptom of hydrocephalus. 

I’ll have hydrocephalus for the rest of my life as I will CP, but I’m glad my shunt has been reliable since I was 11. 
  

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5 thoughts on “My Story: Growing Up With Hydrocephalus 

  1. Very interesting reading about your experiences, thank you for sharing them. I have deep and permanent scarring too, which reduced when I started taking more vitamin D.

    I have CP and my hubby has arrested hydrocephalus, so it is good to know what may affect his headaches and his health. I think stress also makes CP and hydrocephalus worse.

    Lots of love

    Fran xxx 🙂

    Like

  2. Dear Katherine thank you for telling your story to try & understand what growing up was like for you. Many people find inspiration in your life stories you kindly share to promote awareness.

    Like

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