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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Brain Surgery: My VP Shunt

{This post includes a photo of a stapled surgical incision}

When I was preparing myself for my VP (Ventricular Peritoneal) shunt surgery, I had a look via Google for any articles or blog posts that would give me some idea of what to expect. I was able to locate basic information on the surgery itself without difficulty. But personal experiences were harder to come by. So, two weeks after having my VP shunt fitted, I’m at home recovering and feel that it’s only right to create a post about my experience.

As you probably already know, the purpose of a VP shunt is to drain some of the excess fluid from the brain, thereby lowering the pressure inside the skull (I’m no medical expert so apologies in advance if my explanation isn’t spot on – I’ll recommend sources of medical info at the end of this post). In my case the pressure needed to be lowered both in the hope that it may help with some of my debilitating symptoms but primarily to facilitate future decompression surgery for my Chiari Malformation; my neurosurgeon felt that the high pressure increased the risks too much and therefore decided that a VP shunt had to be fitted before we move on to decompression. So, a VP shunt is placed in this way:

Including time in the anaesthetic room, recovery room and being moved around the hospital as needed, the whole thing took no more than 3 hours. I believe the surgery itself took somewhere between an hour and 90 minutes. There was some head pain when I awoke but it was  manageable with morphine (which I had to ask for dose by dose…what’s wrong with a good old fashioned morphine drip after surgery? Sigh.) I was of course tired but thankfully there was no post-anaesthetic throwing up on this occasion; always a bonus. 


(Me and my Shady pillow post surgery)

In addition to the incision at the back of my head, there was one on the right side of the abdomen. This made moving around a little tricky but I was able to shuffle to the bathroom etc within a few hours of waking up from the surgery. Overall I was surprised at how soon I was able to be discharged; I was only in hospital for 3 nights. Of course, had there been any signs of infection or misplacement of the shunt, I’d have been kept in for longer. Scans were taken on the morning after surgery to ensure that everything was where it should be; since my surgeon was happy with what he saw and I was managing the surgical pain with my usual painkillers, I was able to come home rather quickly.

If you’re facing the surgery yourself, you’ll probably want to know how the incision looks. Here’s mine:

The exact placement and size of the incision will depend on the clinical decisions and preferences of the surgeon; mine is at the back of my head, on the right. This was the first time I’d had staples as opposed to thread stitches after a surgery. It looks pretty grim but I didn’t find that they hurt any more that the thread type. Removal of the staples took place 10 days after surgery at my GP practice. The abdominal ones were easily removed. The head ones were more painful to get out, but I was able to breath through it. I found that the surgical pain, which had been waning, was exacerbated by the removal of the staples but I still found it manageable with my usual painkillers (which are, I admit, pretty strong).

It’s still early days in my VP shunt journey. I long to wash my hair! My recovery has been complicated by repeated kidney infections/kidney stone stuff (I’ve been admitted to hospital twice in last few weeks due to this – my kidneys have shockingly bad timing or perhaps they’re just mocking me) but I’m grateful that the recovery from my surgery is going smoothly so far. 

My advice to anyone who needs this surgery is to take it one step at a time and know that you WILL get through it. As is the case with all surgeries, managing the pain from the incisions is really important. When the pain is tolerable, it’s easier to be patient and calm during recovery. It’s important to make sure that when you are discharged to recover at home, you have all the medications you’ll need as well as a discharge letter that explains exactly what you’ve had done. Should you be unlucky and develop an infection once you’re home (signs to look out for include fever, vomiting, becoming disoriented, extreme head pain), this letter is very useful for handing to the person who deals with you at A&E. I’ve found that being prepared for all eventualities and having plenty of pain meds available, even if I turned out to need less than I expected, allowed me to relax and focus on my recovery. As I’m sure is the case with most people living with chronic pain, I’m usually as conservative as possible with pain meds. I’m not Superwoman though; I’m of the opinion that I’m as entitled to proper post surgery pain relief as someone who doesn’t live with pain on a daily basis. If you’re worried about surgical pain being added to the chronic pain you already deal with, speak to your surgeon and nurse before you go to theatre and put a plan in place re. what combination of meds will be available to you when you wake up. As it turned out, I found that I didn’t need morphine beyond 12 hours after surgery 👍🏼. 

If you or someone you love needs a VP shunt and you’re anxious about the surgery, feel free to get in touch. You can email me at chronicpaincockney@gmail.com or follow me on Twitter.

Wishing you good luck & happy days,

Kindra x 

Useful links: 

IIH UK Surgical Leaflet

Hydrocephalus Association: Shunts Overview

NHS Choices: Treating Hydrocephalus 

Johns Hopkins Medicine: Shunt Procedure

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