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

That’s really interesting about the research showing what else it could potentially be masking as re the dementia thing.

This website mentions what you say about what some Drs think about it!

arachnoidcyst.co.uk/what-are-arachnoid-cysts%3F

@Eviolle thank you for your kind reply, and I am so sorry you're going through this at the same time as being mum to a LO.

There's some research out there that these cysts can grow during hormonal surges (with the greatest respect I doubt your GP has done as much reading as some of us!), and the "99% don't grow" is literally a number plucked from thin air as how many people have CT or MRI scans before there's an issue...

Medication which did reduce the frequency and intensity of the headaches, and non-epileptic seizures was lamotrigine (which I believe they also sometimes give for migraines). It did make him a bit zombified but he definitely preferred that to the pain. It might be worth asking to try that as a short term fix?

Ultimately though you really need ICP monitoring. The skull is a closed box, if you suddenly inflate a "water balloon" inside then everything else gets squished - it's not rocket science, but I am honestly amazed that I was on the verge of having to get visual aids to explain this to some trained doctors!

However, just to keep subscribers to the NHS mantra happy, it could be: a vitamin deficiency, hormone imbalance, not enough water, too much water, too much screen time, too much sleep, not enough sleep, not enjoying school (motherhood?), eating without drinking, drinking too much whilst eating, your sinuses (epic story on that one!) or you could just be making the whole thing up for attention.

Please, please get someone to advocate for you. Next appointment they should go with you and say they're taking notes. Have a list of questions (happy to PM these to you). You're feeling rubbish and you're stressed and not being listened to, so that makes it hard to get your entirely rational point of view across.

Also could be thyroid as that can change after pregnancy

Did they test your iron?
If youve jyust had a baby could the symptoms be anaemia?

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.

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

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.

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.

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”.

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

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.

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.

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.

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

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)

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.

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

Sorry that should have said ICP not CRP!!

@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.

https://arachnoidcyst.co.uk/

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.