Mamtanna

[Mamtanna]

I have 11 meningiomas and have worsening headaches, always really bad on wakening.

Medication given by my Surgery made feel nauseous and headaches aren’t being relieved

Huge lack of support or interest from the Neurosurgeon’s nurse I had assigned to me at my

Initial appointment with the Consultant.

I’m on here hoping others who are, sadly, in the same boat, maybe able to help?

[Meningioma12]

So sorry to hear this, I only had 1 meningioma I couldn’t begin to imagine having 11.

I can only assume they are very small or surely the neurosurgeon would be discussing removal options with you. I have noticed they don’t seem to interested until it’s a large size and I can only hope for you that you are having regular MRIs to keep an eye on their growth.

I wish you all the best

[Mamtanna in reply to Meningioma12]

Hello,

Thanks for replying. My urgent referral took 16 months to materialise, and then the neurosurgeon I saw hadn’t read my notes properly. I originally thought I had 2 meningiomas, he said at least 8, and then when he looked at my CT scan he counted a minimum of 11. He then arranged for a new MRI scan which was done on July 10th, I am awaiting an appointment for the results, but haven’t heard from anybody yet and it’s now August 12th. I’ve been advised by my brain tumour support advocate to ring them after I’ve waited for 6 weeks after my MRI or to get in touch with PALS if I’ve still not heard anything at 8 weeks.

I have no idea of size or whether they have grown or if they are pressing on anything vital except, my headaches are worsening, I’m getting pins and needles in my fingers plus lower arm pain. This May all be unrelated,I’m hoping it is, but until I have up to date results of my brain scan then I’ve no idea. I would like to be wrong, but I feel like nobody is particularly bothered by my brain tumours,and the nurse who has been assigned to me to be my point of contact, has told me in a very aggressive tone, meningiomas are slow growing and benign.

This is why I am reaching out to others who can listen advise or support me.