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

[Eviolle]

About 10 weeks ago I started experiencing a whole host of seemingly random symptoms.

These include:
• Constant Headache
• Feeling of pressure in head
• Eye pain
• Sensitivity to light
• Ear pain
• Tinnitus
• Stiff neck
• Head feeling 'too heavy' to hold up
• Burning sensation in lips and mouth
• Intermittent heaviness/numbness on one side
• Dizziness
• Fatigue (constant)
• Blurred vision (worse when tired)
• Difficulty finding the right words
• Poor organisational skills
• Sudden hot flushes/ feeling faint
• Palpitations (infrequently)

There are others too, but all neurological/in my head. I had an MRI scan of my head to check it all out and have been told I have an Arachnoid Cyst in my brain. The headache/pains in my head are exactly where this cyst is, and the place it is in my brain would explain why I've got these symptoms. However, the GP has told me that 99% of these cysts never grow, I've probably had it since birth, and there's no further investigation needed.

How am I supposed to go back to work? (I'm on mat leave at the moment) I can barely walk some days. What am I supposed to do? I can't live with this headache forever. What do I do? WWYD?

I'm really so sorry. Are you in the UK? Why haven't you been referred to a neurologist?
You might find it helpful to contact this charity for support and advice on your treatment.
www.patients-association.org.uk/helpline

So sorry, the nhs is blimmin ridiculous. It's so hard not to be angry at the gaslighting.
Write a complaint to your practice manager, ask for a second opinion. Go private. Go abroad. Write to the paper. I dunno ... sorry I wish I could magic wand away arrogant, incompetent health practitioners who do not listen to their patients.

I'd question why they are sure yours isn't in the 1% that do.

And what then do they attribute your symptoms to?

Then ask for urgent referral to neurology

I'd be asking for a second opinion from a neuro. If the cyst isn't the cause then what is ?

Not good. I actually know a lot about these and the associated co-morbidities.

Sounds like as well as an arachnoid cyst that you may have craniocervical instability and ehlers danlos which I also have. Those symptoms are familiar to me. Nhs wouldn't help me. I had to get proper diagnosis abroad. I wonder if you have a straight neck on your mri. Look into occult tethered cord too. All these conditions go together and explain your symptoms. Nhs always gaslight this patient population. Get on the facebook groups.

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!

I am in the UK, I've requested a Neurology referral, but GP wants to wait and basically said that maybe my symptoms are because I'm "tired" because I have a new baby. 🙄

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.

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.

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 wouldn’t be listening to a GP about it.

Can you pay to see a consultant ?

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

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.

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.

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

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?

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

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.

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.

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

Thanks all, potentially in a few months we could pay for a private Neurology appointment, I didn't know about the Hospital in London. That might be a good idea, plus we have relatives in London so easy to stay, but also not far from where we live.

@MargaretThursday thank you for the explanation, this cyst is pressing against my brain stem so not a lot of space for it to get bigger without causing issues! I shall certainly ask the questions you have suggested.

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.

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

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.

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