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

What My Migraine Was Hiding

{As ever with the Chronic Life series, I must point out that I’m not a doctor or medical expert, just a patient like any other. My thoughts and feelings are just that; medical advice should be sought from your specialist.}

Getting new additional diagnoses when you’ve lived with Migraine for most of your life is a strange and disorienting thing. Finding myself dealing with Neurosurgeons and having a hole drilled in my head to assess the pressure in there (see my ICP Monitoring post here) has been a dizzying experience both literally and figuratively.

Since the MRI I had back in January 2016, I’ve had to get to grips with two diagnoses that were completely new to me. The MRI itself showed that I have a Chiari Malformation Type 1 (click here for a brief explanation of what this type of Chiari is). I had no clue what that meant so had to spend some time finding reliable sources of information to educate myself before meeting with my Neurosurgeon…it’s now September and I feel like I’ve been to the surgeon’s clinic, the surgical ward and MRI department so often that the particular part of West London has become a familiar stamping ground for me & my husband. Fortunately it’s quite a pretty square so we’ve managed to do a little outdoors coffee drinking, in a busy part of London yet surrounded by trees, before/after appointments; you’ve got to take your little relaxing moments wherever you can find them when living  this Chronic Life! 

The next step was meeting with my Neurosurgeon. He recommended that I have ICP Monitoring rather than going straight for the decompression surgery that is the treatment (but sadly not a  cure) for Chiari. He wanted to know what the pressure inside my head was like.

As it turns out this was a good call on his part, as the pressure is high. Having analysed the readings from the monitoring procedure, the Neurosurgical team believe that what they’re seeing on my results is high pressure that isn’t being caused by the Chiari but is a problem in it’s own right. This raised pressure (the term they’re using for it is Benign Intracranial Hypertension or IIH) needs to be addressed, as the team have advised me that leaving it as it is would pose a risk to my sight, memory and cognitive function. They expect that addressing the pressure will be of benefit in terms of the daily pain, but how much remains to be seen. It will also cut down some of the risk involved in the decompression surgery in the future, should I decide to have it.

Here’s the part that’s a little scary for me – they have strongly recommended that I have a shunt placed in my brain to drain the excess CSF fluid down to my tummy. The hospital I’m seen at it is well known for excellent standards of Neurosurgical care and I know that my surgeon does far more complicated surgeries than this but still, I’m a little anxious at the prospect of brain surgery (I was proud of myself for getting through the ICP monitoring!). The shunt procedure has risks attached and is something I’ll live with for the rest of my life, so I’m learning as much about it as I can while I’m on the waiting list.


(Me with the pressure bolt monitoring thing attached)

But lurking behind all this in my mind are other questions – how long have the Chiari and IIH been there? If I didn’t have a history of Chronic Migraine in my own life and in the family, would these disorders have been picked up sooner? SHOULD they have been picked up sooner, despite my Migraine? 

I realise that it would probably be wise to put these questions aside, as definitive answers to them are very unlikely to be forthcoming! But still, I think they are entitled to exist and talking them out with my family and blogging about them may help me to process them. I can’t prove anything in relation to these questions, but here’s what I think/feel: I think that my long standing Migraine diagnosis caused the people treating me to attribute ALL neurological symptoms to Migraine. The specialist I had for over a decade was well-respected with good cause and often went beyond the call of duty to support me and my family, so I don’t feel angry that these conditions weren’t picked up – indeed, I believe that the Chiari may have been less of a problem at that time as my condition has deteriorated since the birth of my daughter (her delivery was hard and I suspect worsened the Chiari, though I can’t prove it). As for the pressure – was my pressure high 5 years ago, 10 years ago, 15 years ago? Does the steady and devastating increase in debilitating daily pain & symptoms over recent years mean that my pressure has been climbing during  time period? 

These questions have the potential to be the kind that circle around in your head at night but never really get answered. One thing I do firmly believe is this – it is well worth discussing with your specialist such tests as an MRI and if need be an LP to check for neurological abnormalities or pressure problems, if you’re living with Migraine that fails to respond to treatment or worsens compared to what you’re used to. Of course most of the time the outcome will be results that are all clear, but I feel that my newer diagnoses were masked by the Migraine. My specialists and I have no doubt that I personally do in fact have Migraine that I’ve inherited genetically but it is not unheard of for people with Chiari, for example, to be misdiagnosed as having Migraine and/or Fibromyalgia (check out the Mayfield Clinic Website for more details on Chiari symptoms). Of course, there may well be many others out there who, like me, have Migraine AND another neurological condition. I’m left feeling that I should have asked for tests back when my condition first deteriorated to the point where I had to stop teaching and became largely housebound (as I still am). 

Having gotten all that off my chest, it’s time to go back to my research on what to expect from life with a VP shunt.

Wishing you good luck and happy days,

Kindra x

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Posts you might enjoy:

Everybody’s An Expert On Migraine.

Migraine and Coping With Hospital Stays.

Making Medical Appointments Work For You.

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