Brain cyst "not causing your problems"... WWYD?

OP, you need to stand up for yourself. Demand a referral.
If you don't get anywhere, start the complaints procedure.

Medical gaslighting at its finest.

You'll be lucky with the neurologist and the neurosurgeon. There's very little data to support them not being a problem and a whole a whole HOST of people suffering debilitating symptoms from them. Go on the Facebook group and look for the good doctor list but it's mostly US based. Essentially you get a craniotomy and it's drained but it may come back and the complications from removing your skull are huge or they can place a shunt. There's not drug so there's no research money. It's a disgrace

Then the the OP will have had an opinion from a professional appropriately qualified to give it.
The neurologist would doubtless be able to signpost the OP onward.

Her G.P hasn't that level of expertise, and appears shockingly dismissive given that the MRI says the cyst is pressing on her brain stem.

GPs are terrible with brain tumour symptoms. My dh was diagnosed with migraines, his GP said 'I can guarantee this is not a brain tumour' - suffice to say he was in no position to give such guarantees. We're now 20 years, 2 craniotomies, 2 other surgeries and a round of radiotherapy down the line. Thankfully all is well now.

There's a saying amongst medics which is something like 'hear hoofbeats think horses not zebras'. That's all well and good but zebras aren't fictional and do actually exist. This kind of attitude leads GPs to play down symptoms.

Maybe the Brain Tumour Charity could give you some advice: www.thebraintumourcharity.org/

And what if the neurologist doesn't think the cyst is causing your symptoms?

Your GP is a disgrace. Is there someone who can go to an appointment with you and kick up hell?

A GP isn't qualified to deal with a complex neurological diagnosis, in particular if this cyst is near the brain stem. You need to see a neurologist. I think I'd have a very blunt discussion with the GP where I would want an explanation on why you are not seeing a consultant for this.

My mum had a Meningioma (benign brain tumour) diagnosed maybe 10 years ago, was told it won’t grow and she will live perfectly fine with it

roll on and she’s had the exact same symptoms as you had, for the past several years, getting progressively worse to the point she was losing fine motor skills and ability to walk.

my dad kept asking the docs(she has other health issues too) for another CT scan the last two years, they refused

she then had sepsis and one day in hospital she fell and banged her head. The docs took her for a CT scan just to be safe. Turns out the meningioma had in fact grown a lot over the years and it was exactly this which had made her so unwell the last 2-3 years

a few weeks later she had the op to remove it. She’s still recovering and it will be a long journey but she’s so much better than before the op

moral of the Story.. never ever ever get fobbed off by the doc when you just know something isn’t right

Can i suggest also that you get a copy of your MRI report to the G.P?
You can take that with you if you go for a private appointment.

I had all sorts of strange neurological issues, many like yours. It eventually turned out to be ME.

I have this. It was diagnosed after a rather spectacular fall in Greece ( two blacks eyes, 14 hours on the floor unable to get up ect). the Greek hospital , very quick with the scans and diagnosis, told me I had a tumour on my brain, it was a bit disconcerting. When I got back to the Uk, I had another scan where they diagnosed a cyst.

I've got some of the symptoms you list (eye pain, head feeling too heavy, fatigue) but as I'm in my 70s I'm not inclined to do anything about it. But if I were much younger, as I assume you are, id definitely not be accepting the "put up and shut up" diagnosis.

You're entitled to a second opinion on the NHS.

Ask if possible to be referred to the National
Neurology Hospital in London - you don't have to be near - they are experts in things like this.

Even if it's to put your mind at rest. They're amazing and will reassure you and help plan for what next if need be.

Is the GP a man by any chance? FFS. Please go back first thing on Monday and speak to someone else.

Get a second opinion from another GP and insist on a referral. Is there any chance you could afford to pay for a private appointment with a Neurologist?

I think I'd ask/demand a second opinion. Your Gp sounds like an arse.

Dh did early work on MRI imaging at the time when it was still called NMR (Nuclear Magnetic Resonance, I think, but people were scared by the word "nuclear" or something).
They found that people could have huge tumours, up to the size of an orange, and it not effect them at all if it is in the "right" place etc.
And other brain issues that normally wouldn't have been discovered until after death if an autopsy was called for, with not causing issues at all. Even sometimes that people had part of the brain missing, but the brain had adapted to rewire so they would have never known if it wasn't for the scan.
There was a lot of discussion about finding out when it was something that needed to be dealt with or not.

Now in your case, if they think it has been there since birth, then they have good reason to suppose it isn't causing your current issues.
So the first thing I'd ask is how they are sure it isn't new, or hasn't grown recently to cause these issues. I know some things do tend to increase in pregnancy, so potentially ask if that's a possibility.
It could be that something has changed which is why it's causing recent issues, but it could also be if you focus on this then you may be at risk of missing what is causing it.
So I would also ask that you are referred on to specialists in relevant fields (possibly neurologist?) because you want an answer. I would emphasis that it's effecting your life and mental health.

Who has interpreted the scan? I would assume neurologist or similar specialist - have you seen the report?

I was told by a GP I had degenerative arthritis in my neck after an MRI. The report said nothing of the sort and gave me a clean bill of health.

Ask for the report findings and see if you can get another specialist to read the scan again.

Stand your ground, tell your GP to stop talking bollocks and get you the referral! Or go to another GP!!

I wouldn’t be listening to a GP about it.

Can you pay to see a consultant ?

I would go back, say that symptoms are worsening and insist on a neurology referral.

If someone says the things about the baby again I would mention sex discrimination and ask them to put in writing that they are refusing a referral because you have recently had a baby.

Basically refuse to leave without a referral- your symptoms are serious.

I know the NHS is under stress but that is just awful to read.

Please give the Patient Helpline I linked to a call when the line opens. They are really helpful and supportive.
They can also help you make a complaint about the G.P if needed. More importantly, they will advise on your treatment rights.
In the meantime, can you see a diffeerent G.P?

You need to see a neurologist, there should be a treatment programme for you moving forward. You must feel so scared. I'm so sorry.

My DD's GF went to a GP who told DDs Dad and StepGM that he was confused because he'd recently had an infection. He later was diagnosed with a brain tumour.

Don't stop hassling your GP. If you get nowhere then I think you'll have to go abroad for treatment. I'm sorry OP.

Have they referred you to neurologist? I’d just wait for that tbh in terms of the root cause and getting the best drugs or treatment . In the mean time, the GP can write to neurology and ask them for advice on what to do while the appt is being waited for bu yourself. I’ve had some bad head pressure and GP has prescribed me amitriptaline for example while she waited for advice from neurology (who sent me for ct scan). So there is more they can do!