My Next Neurosurgery – Decompression

Sometimes when you’ve been waiting for something for quite a long time, it can come as a shock to the system when all of a sudden, D-day is hurtling towards you at speed. That’s certainly how I feel about my second brain surgery.

I received a call today from my Neurosurgeon’s registrar, offering me a date about 2 & a bit weeks from now (scheduled for 17th Nov 2017) to do my Decompression surgery. I had assumed that it wouldn’t be scheduled until after Christmas so was a little surprised to be offered a November date but honestly, I think this slightly unsettled, shocked feeling would have happened whenever the date was set.

This surgery has been on the cards for the last 18 months. Since assessing the results of my ICP Pressure Bolt monitoring in August 2016, the plan put in place by the Neurosurgery team has been to fit a VP Shunt to address the high pressure inside my skull, then move on to Decompression surgery about a year later. My shunt was fitted in January 2017 so we’re slightly ahead of schedule. 

This surgery is a bigger deal than my last one. It involves removing a part of the skull at the base and often some bone from the top of the spine, cutting through the dura and placing a patch that will act like a tent, provinding space for CSF (spinal fluid) to circulate properly, something that hasn’t been happening due the the blockage caused by my Chiari Malformation. I’ll link some reliable medical sources at the end of this post in case you want to learn more. 

I’m not going to lie about it – I’m anxious about this surgery and knowing me, I’ll remain so until I actually leave for the hospital bright & early on surgery day. In this regard, it might be a blessing that I’m not getting as much notice as people sometimes do for a long-planned surgery. I have already reached for my coping strategy – lists! The only way to take the edge off my anxiety is to be as organised and prepared as possible.

I know that this surgery has risks and these days, surgeons talk you through ALL of them in advance. I’ve been warned that the recovery can be long and gruelling. It is not a decision I’ve taken lightly but it’s a risk I have to take after decades of misdiagnoses, ineffective treatments and above all else, bloody awful, debilitating pain & symptoms. I have now become housebound and my quality of life is the worst it has ever been, so ‘wait and see’ is no longer an option. 

I’m so blessed to be facing this with my husband by my side; he shows me every single day what it is to be strong. My parents are there for us always and really put my mind at ease with regards to my daughter – while my husband is with me at the hospital, I’ll never have to worry about her feeling anxious or needing cuddles. Both my brother and my best friend will drop whatever they’re doing if I need them, despite the fact that I’ve largely shut them out whilst dealing with the worst of my illness in recent times. I know how lucky I am to have such support.

So, now it’s time to get going on my ‘getting ready for surgery’ lists and most importantly, getting my daughter used to the idea and making sure she knows how it will impact on her life in the short term. I’m doing this for her as much as for me; here’s hoping she’ll eventually end up with a more functional, less horizontal mum.

Kindra x

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Medical links:

Mayfield Chiari Centre – Decompression Surgery

Chiari & Syringomyelia Foundation – Chiari lecture
Mayfield Brain & Spine – Chiari Symptoms & Treatment Options

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