Chiari Online Support Group

Has anyone had the ICP Bolt Monitoring?

I have an appointment with my neurosurgeon on Monday to schedule the ICP Bolt Monitoring. He wants to check my ICP to see if we need to put in a programmable shunt to control the pressure before doing the decompression surgery. Has anyone had this done? What was your experience? Do you have any tips or advice?

Thank you in advance for your help :purple_heart::zebra:

Hey IaBT,
I have had ICP monitoring. I had a fixed pressure valve on a VP shunt, the distal tubing (from the valve to the peritoneal) fractured (Broke), 15yrs after it was initially placed. The neurologist wanted to see if the shunt was still required and clamped the tubing and placed a pressure gauge within my skull. The ICP gauge was to be in place for 24hr and the pressures monitored, but within 6-8hrs I was having some awful symptoms and my pressures were extremely high and it was deemed that I did require the shunt. They removed the gauge and replaced the distal tubing, believing that this would resolve the issues. And for a short period, approx. a month, it did. But they found my pressures had gone the other way and were extremely low, I had developed what is known as ‘slit ventricle syndrome’, where not enough fluid was within the skull. Further surgery was performed and the entire shunt length, including the valve was replaced with an adjustable magnetic valve.
The proximal (within the skull) end of the shunt was cut level with my skull and is still positioned within my brain. So I now have 2 tubes within my brain, one functioning and one not. I was advised that it was safer to leave that non functioning tube in place than to disturb it.
Tips and Advice: If ANY symptoms appear. Report it immediately. I had a mild headache, but didn’t think much of it. Then felt a bit of nausea, thought I’d possibly eaten something and didn’t speak up. Around 2hrs after the initial headache and nausea started I had a headache from hell and was vomiting violently, which in turn only made the headache even worse (didn’t think that was possible, it was bad anyway) and the vomiting increased. AHHHhh don’t be doing that. If you have ANY symptoms. REPORT THEM.

Merl from the Moderator Support Team