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?

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

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/

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.

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

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.

I think people don't really understand that there no help...my son has a cyst that's 7cm in diameter and he has major symptoms. GOSH
told us it's nothing to do with the cyst and to go home...no help for offered. He's in so much pain he can barely go to school. There's bugger all data.

https://arachnoidcyst.co.uk/

@cysthell please get a referral to Mr Navneet Singh at St George's. Please feel free to PM me. My son had an 8.5cm cyst with significant midline shift and originally we were fobbed off by some very "eminent" surgeons. Mr Singh argued for us (there's a problem with NHS protocol on cysts but I believe he has got it changed as he's done more surgeries since our son) and after CRP monitoring my son had emergency surgery. 18 months since surgery we have "our boy" pretty much back - it was a long road both before and after, and I honestly felt like we were alone fighting a battle (some of the things we were told by supposedly trained medical consultants are frankly laughable) and it was absolutely exhausting.

Sorry that should have said ICP not CRP!!

Your GP is totally wrong. Either see other GP or present at AE. It’s clearly an urgent problem and needs to be addressed by neurologist ASAP if getting worse and if going via AE is only way then so be it. Hope you get some treatment soon x

No. Do not accept this! Go back (ask to see another GP at the practice) and say you want a referral. I can’t believe they’ve said that. My dr did a referral without question - in fact she asked me what I wanted from the appt. And then complain to the practice manager about the other GP.

I have the same diagnosis and could have written the OP

I've seen my GP twice in the last 9 months about too much pressure. I noted both times he (same person) was very quick to say it's not my cysts. But he can't tell me what it is. But when I've gone about other things and say "I think it's because of X because..." they actually listen.

i can't get a referral to neurology because of the wait. My headache nurse has written to the neurologist who referred me to her. (he discharged me after referring me to her)

Ask for a second opinion from another GP in the surgery, demand a neurologist's appointment or if you can afford it go private.

They're actually taught in medical school that they don't cause symptoms. I used to have a friend who was a GP. He said they only do something if you have seizures.

Thanks all, and I'm so sorry so many others, or little ones, are experiencing similar problems with very little help. It's terrible.

@MotherJessAndKittens I did actually present to A&E when my arm and leg initially went numb and I couldn't walk properly, they told me I'd slept funny on it because I was tired and had something called "Saturday Night Syndrome' (you get so drunk/you're so tired that you don't move in your sleep and compress the nerve so it goes numb) even though that's only your arm.

You are on mat leave - how likely is it that you were completely drunk out of your head? Blimey doctors say some stupid things sometimes. PP said medical gaslighting and this is what it sounds like to me.

OP, I would write to the Practice Manager outlining what you have said here and addressing the range of points the PPs on here have highlighted such as the sexism, the GP not being a specialist etc and fobbing you off.

Explain you NEED a second opinion and copy this letter to PALS, CQC and your MP. Make sure the Practice Manager knows you are copying other in.

Watch the flurry of activity as the practice gets you a second opinion and refer you to a neurologist.

You shouldn’t have to go hard ball but you don’t have a choice.

This is really great advice, thank you.

Having been in the OPs situation, many neurologists say it's an incidental finding and doesn't cause symptoms. There's nothing to say that the neurologist will do anything

But she is having symptoms! The GP is not a specialist who can say what’s right in this situation.

Even if a neurologist says the same as the GP, it will allow the OP to talk directly to the specialist and hopefully feel reassured. However, as the OP is having symptoms, surely this can’t be “nothing”.

True, OP is having symptoms
True, there's a cyst showing up on the scan

But that doesn't necessarily mean the two are related.

I've been in the OPs situation and have been told by my neurologist (as they're taught the same thing as GPs about this) that there's no cause for my symptoms. The only reason my dizziness was investigated was because it was after a head injury.

So many people with similar symptoms are told it's nothing to do with the cyst.

It's so disheartening to think that even if I do get seen by a Neurologist, they probably won't do anything with the cyst, but I'm hoping they'll find another cause if the cyst isn't the problem and help me. I'm not holding out much hope though.

I can imagine this happening. But then in that case, they should surely then refer you elsewhere to get the symptoms investigated.

Unfortunately the UK is significantly out of step with the rest of the world on the treatment of arachnoid cysts. I don't want to get into an argument with people online because until you have lived with the sheer debilitation these things can bring you really don't understand it. An "incidental" finding on a routine mammogram warrants further investigation but a great big cyst in your brain potentially causing symptoms doesn't.... The idea that just because something is incidentally found doesn't mean that it's only important in certain disciplines of medicine. It's also ridiculous that it's deemed so important that you have to tell the DVLA but not important enough that anyone in the NHS cares.

However, there are some neurosurgeons in the NHS who do get it, they have done electives abroad where it is taken seriously. But you need to find one of these who isn't part of the "old guard". It's a minefield! In the US there's even research that some people with Alzheimer's/ dementia actually haven't got it, but it's symptoms caused by arachnoid cysts. One of the many things that our 7 year old son got suggested as having was juvenile-dementia. The NHS was genuinely more than happy to sacrifice him to this diagnosis than even consider the cyst taking up almost half his skull might have been the cause. But we were immensely lucky that we found a surgeon willing to argue for our son, and give him his life back.

Sorry I could rant on forever about this!! The constant battling was exhausting, and I am still angry about having to fight so hard. I wish I could find a group of us who could get the condition more properly diagnosed and tested, because how many people out there don't have anyone able to advocate for them. The sad truth is that it's not "curable" so not the kudos many surgeons are after, nor chemically treatable so the drugs companies aren't interested either. It's not heart-string pulling either; I have heard "oh but cysts are harmless" more times than I care to count.