21 July 2025
A procedure only performed by a member of the neurosurgical team
The registrar felt around for the shunt reservoir on my head. He shaved the spot he would use. Then, he covered it with a small sterile plaster. It hurt as the needle went in.
I heard a suction sound as he drew a sample of CSF (Cerebrospinal Fluid), followed by a swooshing/sloshing sound. I heard this quite a few times actually. It was quite loud.
The technician took a series of pictures afterwards. This occurred once the nuclear medicine had time to move down and through the shunt tubing. This was done in sections from head to abdomen.
At the end, he asked me to take about 45 minutes before he finished the last set of images. I walked to the toilet, sat on the chair and then lay back down. Finally we done the last set and ended off with a CT scan of my abdomen. Feet first into the machine.
All this time, the nausea and lightheaded feeling hasn’t gone away.
The site feels sore to lay on but bearable.
Interesting to hear the registrar say he was surprised to see such an “Old school valve. Like one that I’d expect to see in 2018”. Mine was placed in May 2021.
22 July 2025 – Obstruction found in abdomen
I’m so over this hydro drama. How many more surgeries will I have to face? People tell me I’m strong but they have no idea what this does to me every time. I don’t want to be strong anymore. I want to be done.
Will I come out of this OK? Will I have added neurological deficits? Who will take care of me if I do? It’s been so hard to get onto NDIS (National Disability Insurance Scheme) to get help. My family have seen the decline in me, but have maybe become more accepting of this as my norm. Thinking that it’s OK. It’s not. I’m struggling. And, I truly feel like I’ve been buried alive. This will break me. Lord give me strength and carry me through 🙏🏼