Page 3 | Brain cyst "not causing your problems"... WWYD?

Eviolle · 2024-07-06T19:52:49+00:00

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?

Original poster

Eviolle · 07/07/2024 23:17

Serazias · 07/07/2024 16:07

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'm so sorry to read of your struggles for your LO, and I'm so glad you managed to get treatment for him.

I was hoping there was some sort of wonder drug I hadn't heard of that may be offered, but, as you say, as does everyone I've spoken to so far about this condition, no one really cares because it can't be cured and it's an "incidental finding with no clinical significance" anyway. 🙄 So why bother huh?

OP posts:

Cantileveredy · 08/07/2024 00:13

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

Cantileveredy · 08/07/2024 00:14

Also could be thyroid as that can change after pregnancy

Serazias · 08/07/2024 07:44

@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.

fashionqueen0123 · 08/07/2024 09:27

Serazias · 07/07/2024 16:07

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.

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