Why I’m glad I said no to brain surgery (for now)

I’ve not found it terribly easy to talk about my meningioma brain tumour recently because quite simply, there are other priorities on all of our minds right now! But I wanted to write a blog post about why I am glad I said no to brain surgery (for now) when asked to consider it a few months ago. 

What’s happening right now?

I’m feeling very lucky right now. A whole lot luckier since when I was first diagnosed just over a year ago. My local NHS trust has managed to keep up the appointments for my neurosurgeon, radiologist (for MRI monitoring scans) and ophthalmologist/orthoptics (to check eyesight and eye health relating to my meningioma) appointments. However, my appointment with the neurologist to deal with my terrible headaches and tinnitus was due in March 2020 just as the pandemic hit and kept getting postponed because even though monitoring was urgent, dealing with symptoms was not. Luckily, I managed to get a telephone consultation in November 2020 and he prescribed me some new medication which is working wonders.

No more stabbing headaches! I have a few odd headaches now and then, which although can be a bit of a worry are nothing like before. Hooray for modern medicine (and finally managing to get that consultation). My eye is still a bit weird and swells up sometimes, but I treat this with eye drops and a hot compress every now and then. 

Scanning and surgery

I was last scanned back in October 2020. Having a scan during the Coronavirus crisis has proved extremely challenging. Wearing a mask inside the scanner within the confines of the head cage makes me extremely claustrophobic and of course, there are the added anxieties of entering the hospital environment in this climate too. When I last saw the neurosurgery team, I was surprised to be offered surgery. This was due to my proptosis (e.g my left eye sticking out) and progressive retro-orbital pain (pain in my eyeball). 

Should it stay or should it go?

As the consultant pointed out, they cannot be 100% sure that the tumour is benign unless surgery is performed and a histological assessment can take place. They were 90 something % sure when they first told me, plus I have lived with it for about a year now, so I’d like to think it is what they originally diagnosed. He tells me that their growth is difficult to predict – some may stay the same for ages, then grow quickly, some may grow slowly or some may stay same then not grow and some may grow quickly. They are not predictable, hence the need for careful monitoring. Tumours which grow too big can cause urgent and serious problems (scary!). 

What would surgery involve?

Surgery would involve a full craniotomy where they would go in through the top of my head and remove the tumour from behind my eye, removing the involved bone and reconstructing it with a synthetic construct. The surgery would aim to reduce the ‘mass effect’, e.g the pressure effect of this tumour – e.g. how it affects the optic nerve and other parts of the brain and the second aim would be a biopsy/histological diagnosis.

Pros for surgery

If the tumour gets bigger, it could cause blindness, fits or worse. It could also make my proptosis swell larger. Headaches or other symptoms may also be problematic. Surgery may help prevent any of these happening. Although the surgery is complex, it is a surgery that has been performed worldwide so surgeons are skilled. It is not common, especially with the bony element but it’s not a ‘one in a million’ kind of thing. Once the tumour is removed, even there is the possibility it could grow back but this may take years. My proptosis may shrink, could save my eyesight if at risk and protect from any other symptoms. We would also find out what it is so could treat as necessary and also have peace of mind.

Cons of surgery

The risks of this brain surgery are incredibly scary. I’m not going to lie. The fear I mentioned in my previous blog 7 things I wish people knew about brain tumours.  Some of the risks too 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 lower. A new one for the list is also a risk of Covid-19 transmission. In October I didn’t really think about this one, but now it is high on my list of risk factors. I know of several people who have gone into hospital now only to have contracted Covid-19. It is a definite risk factor.

Not ready right now, thanks

So as you see from my pros and cons lists, I am definitely swayed towards the I am definitely not ready to say yes to surgery right now. My scans do not show growth, and thanks to a clever neurologist who has managed to sort my headaches out from being the absolute pain that they were, I can mostly deal with my daily symptoms now. I do get odd headaches and feel a bit weird sometimes but it’s nothing like those stabbing headaches.

When they called me, I did feel a bit like a maverick. I was told ‘Ok, well that is your decision.’ I thought yes, it is, but also, I’d like to be guided by what is best for me by neurosurgeon’s advice. Life’s never that clear cut though, is it? Thank goodness I’ve been able to have 2nd opinions and also extra advice and support from charities such as brainstrust to help me form a clearer picture on this journey. (Blatant plug: do check out my fundraising page for brainstrust on JustGiving too. They do brilliant work and charities need help more than ever as well as being busier more than ever too.)

Continuing monitoring

The alternative I am being offered at the moment is to continue conservative management with radiological monitoring of my symptoms. In that case, they advise that my “current present symptoms will continue and the meningioma may grow and cause worsening of my symptoms. Eventually, it can cause a compromise of my vision.” But they do reassure me that we can keep an eye (if you pardon the pun on this). So let’s see. (pardon the double pun). But one thing’s for sure. I don’t want to go into hospital right now for major surgery. It’s a major risk, it’s a stretch on over-stretched NHS resources and I don’t want to be in a position putting of not being able to see my family for an unspecified amount of time. I also don’t want to risk getting more unwell. We’ll cross more bridges as and when we need to. But for now, I’m glad not to be putting me or my family and friends under unnecessary major drama. That can wait for another day!

Join the conversation!

It’s always good to hear from others, and if you or others are going through the same (or you’d just like to say hi), it’d be great to hear from you. You can comment below or join the conversation on our Facebook, Twitter or Instagram pages.  

My story

I was diagnosed with an intra-osseous sphenoid wing meningioma brain tumour in November 2019. You can view previous blog posts all about it at:

• Living with a brain tumour: a journey into the unknown
• Me, my brain & I – a new year’s update
• Frustration, flowers and fundraising
• Up for the challenge (in more ways than one)
• 7 things I wish people knew about brain tumours