My name is Alex, and at 33, I was diagnosed with Hydrocephalus on Christmas Eve 2023.
In the weeks leading up to Christmas, I began experiencing migraines, brain fog, blurred vision, loss of balance, and a lack of appetite. On Christmas Eve, my husband and parents rushed me to Emergency, where a CT scan and MRI revealed a tumour blocking the flow of cerebrospinal fluid in my brain, causing obstructive hydrocephalus. I was immediately admitted for urgent brain surgery on Christmas Day. Safe to say it wasn’t the Christmas I was expecting, but it’s one I’ll never forget.
The surgery went well, and they were able to remove half of the tumour. But I had to wait a week to find out if it was benign or cancerous. Thankfully, the tumour is benign, but the journey was far from over.
Next, I underwent an endoscopic third ventriculostomy, intended to help the fluid drain properly. Unfortunately, it didn’t work, and the decision was made that I needed a VP shunt.
In the New Year, I had my third surgery to have the shunt implanted, which was a success. Recovery has been slow, however I am grateful that I was cleared to drive again after just three months, and I have returned to work almost at full time capacity.
I am eternally grateful to my neurosurgeons for saving my life, and my nurses for taking care of me while in hospital over the holiday period. While the journey has been tough, I’m incredibly thankful for my health, the support of my family, and the strength I’ve found to push through each challenge.
During my recovery, although I had the best support from my loved ones, I felt the need to speak with others who had gone through a similar experience to myself, which is how I came across the Hydrocephalus Association, and I’m very happy I did! Being able to speak with others living with a shunt who have an appreciation for what day-to-day life is like, has played a huge part in adjusting to my new normal through acceptance and understanding.
At almost the one year mark, although it’s taken me this long to be able to write my story without getting overwhelmed with emotions, I feel the strongest both mentally and physically I have in a long time.
I’ve spent the last 11 months getting out of my comfort zone, trying new things and embracing all that life has to offer to the best of my capabilities.
This journey has been an eye-opener, but it’s honestly taught me so much about not taking life for granted and to be grateful for every living moment.
