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.

[Meningioma12 in reply to Mamtanna]

From my experience they are slow growing, I knew about mine for 12 years before I had surgery this year but I did have an MRI every year to keep an eye on the growth and generally waited up to 1 month after scan to have a phone appointment with my neurosurgeon I only actually met the surgeon twice during the entire 12 years apparently they find meningiomas to be a boring type of Tumor but for us patients it is still a tumour regardless of size or significance

[Mamtanna in reply to Meningioma12]

I agree with all you say. I saw my Neurosurgeon last week for the results of my second MRI. He began the appointment by stating this will be a quick appointment today as your scan is more or less the same as the first one. And, dismissed my headaches as not being related to my Meningiomas even though, without him telling me, the pain is in exactly the same place as my tumours. He said there’s only 3 types of headache you would get linked to the tumours and that would be a brain bleed, brain pressure or if the brain tumour was large. After that he said I’m now on watch and wait, see him again in a year, every year for 5 years then every 3 years. By 5:30 pm that day I’d received a portal appointment for a ‘telephone’ appointment in exactly one years time. So, on the one hand I’m glad I don’t need any type of treatment and if I did I’d be seeking a second opinion and woukd definitely change doctors. You need to feel confident that the care you receive is from somebody who doesn’t make you feel like you aren’t worthy. Not much to ask. A good bedside manner goes a long way, then honesty and transparency.

I agree I think they find small tumours boring and forget that to us this is huge! That whatever it is it’s actually grown on our brains!

Take good care of yourself xxxxxx