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(4 Posts)
LucyLocketLostHerPocket Fri 25-Mar-16 13:15:52

Been told there was one seen on CT scan following an unrelated accident. Got to have an MRI too but just wondering if anyone knows anything about these benign tumours? Neurologist seems unconcerned but I've scare myself googling them so what's the reality?

ProfYaffle Fri 25-Mar-16 13:25:03

My husband's got one. First diagnosed in 2004, had a craniotomy then 2 further surgeries in 2008 and this year. Just about to start radiotherapy. It all sounds more dramatic than it is, he's fine in himself.

Have you found Meningioma UK on facebook? Lots of people in the same boat on there.

LucyLocketLostHerPocket Fri 25-Mar-16 15:44:50

Thank you Prof and you're right it sounds very dramatic. I have found all sorts of information which suggests that some kind of treatment is the norm and that's why I was so surprised that the neurologist I saw was so dismissive. I wonder if more will be said about it after the MRI (which is for a different thing).
It's very reassuring that your DH is ok. I'll find the support group online too. I just don't know whether to be concerned or not and feel a bit in limbo.

ProfYaffle Fri 25-Mar-16 17:06:49

Yes, dh is fine. He lost his sense of smell after the first op but that's the only thing he's been left with.

I'm no expert but my understanding is the meningiomas are very slow growing. A lot of people are just on a 'watch and wait' regime where the tumour is monitored and if it's causing no problems they don't treat it.

Sometimes tumours have been there undetected for years and become calcified. Once this happens they are usually dead and don't grow (large parts of dh's are calcified) and therefore treatment isn't needed.

Meningiomas are not always a case of 'quick - get it out!'. Obviously after the MRI you should know more.

My top tip would be to check your critical illness policy on your mortgage if you have one. Ours paid off the mortgage after dh was diagnosed.

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