My Craniotomy Experience – Brain Surgery and Brain Tumours are not for the faint-hearted!

Sharing my experience with a brain tumour is sometimes daunting, but I find it really cathartic too. I have found it very worthwhile opening up about such a significant part of my life. After just over four years of active monitoring / watch and wait, and a decline in symptoms, I was told in December 2023 that a craniotomy (brain surgery) was now recommended. That surgery took place in March 2024 – which is why I haven’t written for a while, so please excuse my absence!

You’re probably wondering how on earth you even deal with a brain tumour and going through the scary-as-anything brain surgery. You may be reading this out of interest, or even be or have been in the same position. It’s natural to wonder if you could handle it. That ‘what if’ feeling, that knot in your stomach, becomes very real when the unimaginable happens.

Introduction

The brain is a funny old thing. It is the most complex organ in your body, the control centre of your body, and the thought of brain surgery is enough to strike fear into even the toughest of people. Whether you’re facing brain surgery yourself or supporting a loved one with a brain tumour, or even just interested in finding out about it – understanding some of what this journey involves may make things clearer. I hope this blog can go a little way to raise brain tumour awareness, brain surgery and the things that go on, either as an interesting (I hope!) read or a caring smile to know you are not alone.

Diagnosis and Initial Symptoms

My journey began in October 2019, when I visited my doctor with persistent, unusual headaches and a “sticky out eye,” where one eye was larger than the other. I was quickly referred for a CT scan and an ophthalmologist consultation under the two-week wait rule.

In November 2019 shortly after, I was diagnosed with a sphenoid wing meningioma, a type of brain tumour located behind my eye. I was told by the ophthalmologist (the wonderful Professor Ahluwhalia) and I was due a neurosurgeon appointment in a couple of weeks time. My headaches persisted (like what first brought me to the GP) and my head felt very weird like it was going to explode. I had a few A&E visits, some ending up with me being prescribed steroids, which helped a great deal but were no long term solution. A lot of the initial headaches and panic was thought to be anxiety-related and not due to the brain tumour. However, these headaches did feel a lot different to stress or dehydration headaches.

In December 2019, I had an MRI and saw my neurosurgeon. I was initially told an operation may be on the cards (but the plan was not definite at this point).

The story continues….

Watch & Wait

I had more and more scans over the years between 2019 and 2024, the year of the surgery. Brain MRI scans are not fun at all and rightly so, the word ‘scanxiety’ is termed for those of us that get quite scared about the thought of an impending scan, which involves being in that tube for almost 45 minutes, and having to wear a claustrophobic ‘head cage’ whilst being subjected to noises that give me nightmares. That is not an exaggeration! You often have to have a contrast injection as well which I think (but don’t know for sure) is to enhance the images. I particularly dislike the sounds that sound like a machine gun, an epson printer and a loud, harsh alarm. My brain always tells me that this may be a real alarm and you will be stuck in the MRI machine not knowing what to do as everyone has evacuated the hospital. Crazy I know, but I can’t get that thought out of my mind. If you’re interested in what these sounds sound like, take a look at this YouTube (no pun intended) video here:

https://youtu.be/Pxw2ZpGp5AM?si=2q_RU5rprKVvdlIj

Claustrophobia was worse during the covid period. We as patients had to wear masks IN THE SCANNER. So you put your face mask over your mouth, and then your head fixed in a cage before being wheeled in. I could not cope with this, and several times I begged the staff to not require me to wear the mask. I showed them my evidence of a negative covid test, watched them antibac all of the parts, but still I had to wear it (aside from one time where I wore my sunflower lanyard and told them how anxious I was and didn’t want to stay). 

The neurosurgeon told me that the plan was to watch and wait. There were a lot of ‘nearly decisions’ on whether to have the surgery there and then at various appointments. However, slowly but surely, I was convinced of the benefits of watch & wait. I then understood why active monitoring can be a positive choice. The pros of waiting to operate far outweighed the cons which were pretty nasty. I may have had the brain tumour inside my head but it wasn’t giving me life-or-death or very awkward symptoms I couldn’t learn to live with. The title of one of my favourite Maximo Park songs, ‘Dormant until explosion’ describes it perfectly that the tumour was dormant until explosion – and when it started giving me real hassle, then that would be the time to act. 

Symptom Management

Once I was comfortable at the watch and wait method (which was totally new to me – all I know is that I’d always thought if I had a tumour anywhere in my body I would like it “out out” as soon as possible), then it was time to manage the ever worsening symptoms.

It was frustrating at the GP, as quite often they were questioned as migraines or anxiety. Managing the pain was difficult – GP’s offer help by prescribing strong painkillers but sometimes that’s not what’s needed – and also I didn’t want to be ‘away with the fairies’ whilst having to live life and also look after our daughter’s needs. Even requesting to be referred to a pain management clinic, I was informed that the guidelines stated that you needed to be taking the maximum strength pain killers before I’d be considered. I did not want to go super crazy with the pain meds, which of course can be addictive and also affect your quality of life.

I had to have a long wait for the neurologist, which wasn’t helped by covid delays. It seems that the appointments for diagnosis came in fast, but the waits for appointments to manage the day-to-day pain were a long time. I was finally prescribed some different tablets so as to make my head pain less worse. Symptoms worsened over the course of 4 years since my meningioma was discovered – some obvious and some less obvious. At the point where I started to get double vision, my colour vision faded and I was having crippling headaches all day every day, then it was time to speak to the consultant staff as to if I now wanted the surgery. They advised that as the brain tumour was now affecting my eyesight, it may be days or months that I may lose sight in that eye. They said that I needed to have surgery now, as now the surgery pros far outweighed the risk cons.

Trouble is – the risks of brain surgery are quite a difficult swallow. They aren’t small risks. Bleeding/swelling in the brain, blindness, double vision, risk of stroke and neurological deficits which may include paralysis, weakness, problems with speech or swallowing, risk of death, risk of brain fluid leakage, brain fluid build-up (which would need further procedures), risk of eye proptosis persisting, eye sinking inwards, the persistence of current symptoms, risk of residual or current tumour which may necessitate further treatment, risk of facial nerve damage (affecting the left side of face/forehead, eye and eyebrow movement), risk of facial numbness. Then there’s the risk of general anaesthesia which even though serious are more of an acceptance as the risks are far, far lower. But the scariest ones were the possibility of blindness, paralysis or death. What if I wasn’t there for my family?

Information and Emotional Support – Who do you turn to?

One moment you’re told you have a brain tumour, then the next minute you’re on your own. Who do you turn to on diagnosis? The name of the tumour had been told to me by the Ophthalmologist but who do I address questions to? And not doom scroll on Google?

The first port of call I went to was at UHCW – and the Macmillan cancer support unit. They were there with a cup of tea, kind words and very helpful information. If there isn’t already, then I think every hospital should have one of these helpful hubs. They signposted me to Brainstrust, who, as a charity have provided me with lots of support – both practical and emotional. They gave me a support worker (the wonderful Jodie Eveleigh) who I could go to with any question, kept me informed and provide lots of support in terms of information. They also connected me with a network of helpful members of their team and also patients with the same or similar tumours, who have been great to talk to and find out about their experiences (and also share some of my own).

Symptoms before surgery

This is a list of the symptoms (joy of joys – not) that I experienced before surgery:

• Headaches
• Double Vision
• Trouble seeing in darkness
• Short Term Memory Issues
• Sensitivity to Audio & Visual Stimuli
• Dry Eyes
• Anxiety
• Brain Fog / Concentration Issues
• Noise in head/Jerks
• Impaired Colour Vision (reds and greens were faded in left eye)
• Panic Attacks
• Dizziness
• Tinnitus (thunder, crackling, ringing, pulsatile, whooshing)
• Visual Hallucinations
• Eye Pain
• ‘Moving pavement’ – it felt like all pavements were travelators that were moving with me
• Snow Globe/Rice Crispies feeling in head
• Reduced field of vision
• Head feels like it may explode

The Surgery Experience & Stay in Hospital

The day of my surgery was undoubtedly one of the scariest days of my life. 

Imagine your skull, about to be cut open and drilled into and worked upon close to critical parts of your brain. That’s what they did. They went in. They sliced, they removed and they stitched me up. I was very scared, but I didn’t really have a choice but to go ahead. Head vs heart and all that. It was either this, or… blindness, or the thing was going to be something that caused more serious damage. I just wanted to wake up alive at the end of it (first goal), and be rid of the nasty tumour (second goal) without any serious problems.

If you’re thinking ‘How do you even prepare for that’. Well that is totally normal. You don’t. You just do! You put one foot in front of the other and cling on to hope for dear life. You also put your entire trust into the people who are at the top of their game. After all, it’s not rocket science or brain surgery. Oh, wait…. 

My Neurosurgeon, Mr Krunal Patel was very informative and empathetic in helping me make the decision to have surgery. Eventually, in December 2023, when it was impacting my optic nerve and also causing worsening headaches and a sense of losing my balance (the ground felt like it was moving like one of those travelators at the airport), especially downhill, surgery was now not just recommended but encouraged. My sight could be at risk within months or in the next year or so or it could affect me in other ways. There was a certain risk to life with such an intricate operation. Time to be brave! I must say, and this is quite luxurious really, he was happy to accommodate waiting until March 2024 so I could see my daughter in the big Warwickshire scouting ‘WAGS’ show.

The Op & hospital stay

I was admitted on the 13th March 2024 to UHCW on Ward 43. The drive to the hospital was very eerie, my other half and daughter gave me lots of well-wishes. One of them knowing the scary reality of what the op would involve, and one obviously not so aware of the extent. I was shown into a room with some others who were also awaiting surgery that day, and then I got to check in with my neurosurgeon Mr Patel who also helped answer any questions before they went ahead. By this time I was petrified. But had to compartmentalise that fear and just face facts. He asked if I had any more questions, I didn’t want to hear any more so my last question was ‘Can I get a selfie’? Some things never change!

I remember the pre-op preparations, the anaesthesia and my brain trying to tell me not to be uncertain about anything and just trust everyone. Sonia, the anaesthetist was a perfect example of someone kind, calm and putting my mind at ease right until the drugs hit and did their work.

The team who operated on me was led by neurosurgeons Mr Krunal Patel and Dr Hassan Othman and also involved Gary Walton from maxo-facial. 

The operation itself was called a “Left orbito-zygmatic craniotomy for excision of intraosseous meningioma”. When I looked this up for further definition, it said that this meant they accessed the superior and lateral surfaces of the orbit and the anterior and middle cranial fossae. The orbit is the bony cavity that houses the eyeball and surrounding tissues. An intraosseous meningioma is a type of brain tumour that is bony.

The Hospital Stay

I spent 10 nights in hospital which consisted of 3 in the Critical Care Unit, 3 in Neurological Enhanced Care Unit and 4 in Ward 43 the Neurosurgical ward. The whole experience was tough emotionally and physically, but as you can tell maybe from reading this now I came through the other end. The teams at UHCW were fabulous and really kind and caring. 

There were some things that did traumatise me, the vulnerability for a start of not being able to fend for yourself after the op, and the fear of not being able to communicate. Also, the scary things you hear going on around you, which included people sadly at the end of their lives. Very humbling.

My daughter sadly couldn’t visit when I had reached the Neurosurgical Enhanced Care Unit (NECU) due to her age, but I don’t (nor does she) take no for an answer. They were able to mobilize the oxygen tanks and arranged the side room just outside the ward where I could reconvene with her and my partner for the biggest hug ever. My partner and also my mum visited me as well which was so nice, and a great support.

Symptoms after surgery

Straight after brain tumour surgery was very strange. I was admittedly, up to my eyeballs in very strong pain relief – but the main ones that troubled me at first, were my eye not opening (and wondering if it ever would again), not being able to open my jaw wide enough to eat (even a banana was a struggle) and also the nerve pain. I also had pain in my ear, even though I’d cleaned them out, it was like something was stuck. Also, I couldn’t walk properly. There were also lots of water-like noises in my head. Apparently this is all the brain fluid re-adjusting after surgery. Luckily, these noises stopped, my eye opened a little more day by day and the ear was back to normal after a few weeks.

The symptoms that I was left with post-surgery are:

• Headaches (not as bad as before – totally different type – not feeling like it was going to explode)
• Trouble seeing in darkness
• Nerve pain in head (new symptom due resulting from the surgery)
• Balance issues. Also painful to bend down and pick something up when my head tips down.
• Short Term Memory Issues
• Sensitivity to Audio & Visual Stimuli – mostly when tired (new symptom)
• Anxiety
• Panic Attacks
• Brain Fog / Concentration Issues
• Jaw pain when eating (new symptom following the surgery)
• Noise in head/Jerks
• Dizziness
• Tinnitus (thunder, crackling, ringing, pulsatile, whooshing)
• Eye Pain
• Dry Eyes

Recovery and Rehabilitation

The recovery process has been a long road, and one I still travel. It has been frustrating but I remain determined to regain a sense of ‘normality’, whatever that is. Post-surgery, I have experienced a range of physical and emotional challenges, including pain, fatigue, and a sense of vulnerability.

I’ve been advised to not jump or run due to the impact on the head. I can do that as running has never been my natural forte! I was disappointed to realise that netball was no longer possible for me. That is until I found walking netball with the best walking netball team in Warwick (The Hornets). A perfect way to get back into exercising at the right pace. It definitely isn’t slow, it’s quite a quick game still, but at least there’s no jumping or running involved.

The stitch removal was interesting to say the least, but it wasn’t *as* bad as I expected when someone was pulling out approximately 26 metal staples from my head. Lots of tugging, and then a return visit when a part of a stitch was stuck in my scalp. The relief though to be free of the scary looking metal pieces was something else.

Approximately three weeks after the operation, my friend Lucy and I were very lucky to be able to go and see Miles Jupp on his ‘On I bang’ tour. In the show, he talked about his low grade meningioma, symptoms before and after and also his craniotomy and hospital experience. We met him afterwards and talked brain tumours, it was nice to talk to someone in the same position, understand everything ‘moving’ and the fear that surgery brings, amongst other things. Nice man and extremely funny.

I am extremely grateful to Mr Patel & team at UHCW for debulking my meningioma and saving my sight and being skilled in maintaining my life going forward. Recovery is progressing well, but frustrating at times because I am not the person I once was years ago, and generally feel terrible most days. However, hooray for the operation, there are many things to be grateful for. The most important thing, coming out alive but also the symptoms that were fixed:

• Double Vision
• Impaired Colour Vision (reds and greens were faded in left eye)
• ‘Moving pavement’ – it felt like all pavements were travelators that were moving with me
• Snow Globe/Rice Crispies feeling in head
• Reduced field of vision
• Visual Hallucinations
• Head feels like it may explode

The Emotional Impact and Adjusting to Life after Surgery

The latest MRI scan showed that there is no significant evidence of the tumour (hooray for removal!). I will have annual scans to a point, and then also be monitored for at least the next 20 years as it has the potential to grow back – but if it does it would be expected to grow very slowly. Fatigue is ongoing but I just have to deal with that and re-adjust. It’s strange as it’s not just regular tiredness. It’s a total exhaustion thing that takes you by surprise, my tinnitus starts being loud and I have to shut down. Early nights don’t seem to make a difference, as even when I get enough sleep, depending on exercise and any stimuli, fatigue still hits me daily. Pain and balance issues annoy me immensely and are being helped by medication.  It was a rare type of tumour but the outcome is positive. I just need to manage this nerve pain and fatigue and continue the recovery and/or adjust to a new life. Where I had the surgery on my head, the hair hasn’t yet grown back all the way but it’s getting there. My head also looks a bit ‘dented’ where the muscle has been affected, but that’s me now!

It is a journey, but we are all on one, whatever that looks like. Yes, this was a pretty harsh blow but you have to be grateful for the things we have and also the people that help us. I would love by means of the Happy Family Hub blog to increase the conversation regarding brain tumours and keep communication going! Good communication + positive, open, truthful attitudes = empathy and education.

Thank you to all my family and friends for holding my hand and being so supportive! Also, especially my partner, daughter, mum who truly were the bravest!

Congratulations for reaching the end!

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