Please or to access all these features

AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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

55 replies

Eviolle · 06/07/2024 20:52

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?

OP posts:
beeloubee · 06/07/2024 21:14

Eviolle · 06/07/2024 20:52

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?

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.

romdowa · 06/07/2024 21:12

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

itsgettingweird · 06/07/2024 21:12

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

Commonsense22 · 06/07/2024 21:09

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.

BetterTheDevlinYouKnow · 06/07/2024 21:09

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

Swipe left for the next trending thread