I have joined few social network sites for people with Acoustic Neroma Tumours and noticed a post recently where someone was experiencing negative, argumentative and dismissive attitudes from people who were supposed to be offering support. I was quite astonished at the experience this person was having as everybody I have told so far couldn’t have been more supportive and caring. So what was it that had got these people so het up?
It appears that there are some people out there that don’t believe an Acoustic Neuroma is a brain tumour; “it’s not a big deal”, “it’s not cancer”, “just deal with it” and not only that, they see it fit to argue this point with somebody who has an Acoustic Neuroma Tumour….the nerve of them! (yes, that was a bad joke).
So why is a controversial topic? (to the minority). I can see why some people would think it was a brain tumour and why some people would think it was not. Acoustic Neuroma is also known in the medical world as vestibular schwannoma and is a benign tumour which grows from around the auditory nerve and can grow as far as the brain stem (1) (not something you want to mess with). With this in mind (another bad joke) one person’s tumour may only ever grow in the inner ear therefore that person may feel uncomfortable claiming a brain tumour but another person’s may grow and stick to their brain stem….clue is in the name people.
There are generally three methods of treating these lovely bundles of extra cells:
- Watch and Wait – regular MRIs to see if it grows, hopefully it doesn’t
- Radio therapy – sometimes recommended to those who are not fit for surgery
- Surgery – surgeons going into your head to remove the tumour (note I don’t claim or not claim brain surgery, yet)
As you can see, I have kept the three treatment options very high level and brief. The reason for this is that they in themselves are very complex and deserve their own post. For example, with surgery there are three different routes, all with their own risks. But the reason I wanted to list them is so I can touch briefly on the surgery option and how it adds more confusion around the topic of ‘is it a brain tumour’. Whilst researching surgery options it became apparent that the surgery can be carried out by an Otologist (specialises in the ear) (2) and who is also trained in Neuro-Otology which focusses on neurological disorders of the ear (3) or it can be carried out by an Otologist / Neuro-Otologist and a Neurosurgeon (performs surgery of the brain, amongst many other things) (4).
I also came across sites which refer to this surgery as skull based surgery. Sydney based Neurosurgeon Dr. Brindha Shivalingam categorises Acoustic Neuroma under ‘Skull Based Tumours’ on her professional website (5) as does St Vincent’s ENT online profile (6). However, the NHS (UK health system) refers to Acoustic Neuroma as a brain tumour (7) and refers to a treatment option of “brain surgery”.
Still confused? So am I. But to be frank, I don’t care.
This is how I describe it “I have a benign tumour which grows from the inner ear to the brain stem and I don’t know yet where mine has reached. I may need to have surgery either via my ear which will make me fully deaf in my right ear, or via my head just above the ear, pushing the brain aside (I have watched this on YouTube) so they can reach the tumour but this may damage my facial and/or balance nerve.”
There are many symptoms and risks that come with this type of tumour because of the place it grows it can be harder to treat than if it were just plonked on the side of the brain. Yes, they have to tell us of the risks….people keep saying this to me. However, with this type of surgery the risks are very real. A stay of 7-14 days in hospital, 1-2 of those in intensive care, vertigo, dizziness, ongoing balance issues, facial paralysis (sometime permanent), partial or full hearing loss, CFS Leak (brain fluid dribbling out of your ears or nose) and long term fatigue are some of the possible side-effects of surgery (8). So, whether it is a brain tumour or not a brain tumour (it appears even the medical world interchange the terminology), given all that the person is going through why would you question it?
My advice to those dealing with people who choose to argue this is to ask yourself the following:
- Are they a loved one who is scared out of their mind and are just trying to cope? If so, let’s move on and support one another.
- Are they somebody who is supposed to be there for you but chooses to argue and create drama? If so, I personally would remove myself from their life. This type of person is not going to develop emotional intelligence overnight and suddenly be ok with you receiving so much attention. They are likely very insecure energy vampires where everything needs to be about them.
- Are they an acquaintance whose opinion doesn’t really matter to you and probably indicates more about their personality than yours? If so, let’s move on and support one another.
Not everybody will be kind, not everybody will be understanding. But as long as you are kind and understanding to yourself, you can thrive.