newly diagnosed

[Sorcha77]

hi! .. Following an MRI in April, they found (incidentally) a CPR tumour. I was advised at the time that it was likely benign but I would be sent for a CT scan for my chest abdomen and pelvis to make sure no other lesions. Thankfully this was clear. I then had another MRI in September which has shown no change. I’m now on watch and wait with another MRI booked for 9 months time. It’s not officially been diagnosed as a AN due to its shape (doesn’t have the wafer shape from the ear drum it’s all on the brain side) I had my review of the masters MRI yesterday. Ive. To contact them should my symptoms change or if I get any new one. I don’t have any issues with hearing on right side and for now it’s intermittent numbness on chin and tingling on lower lip (both I get on and off and have for some time). I guess I’m just feeling a bit riderless with it all and wondered if anyone has similar experiences to what I have been told. Size wise it’s high end of medium.

[Alison_L]

Hi Sorcha. Excuse my ignorance, but what's a CPR tumour? I was diagnosed with a 1cm AN in February, which by September had developed a cyst and the whole thing had increased to 1.5cm, so I'm having a 5 week course of Fractionated Stereotactic Radiotherapy (I'm sure they just make up these words!) in January. My AN has caused right-sided deafness along with some tolerable tinnitus. I hope your tumour continues to stay still xx

[Sorcha77 in reply to Alison_L]

Hi Alison, sorry that was a typo from me!.. I meant Cerebellopontine angle (CPA) tumour. Sorry to hear about your diagnosis too and the affect on your hearing that’s it’s had. Mine hasn’t changed between MRI’s it’s currently around 2cm and alongside a cyst xx

[Alison_L in reply to Sorcha77]

Ah, just looked up CPA - I didn't realise I had one of those, and you have a cyst as well. I'm not keen on our lodgers sub-letting!

[Sorcha77]

lodger! Very good! 😁 … I have been told that the cyst isn’t a concern it’s the tumour really however I’ve just been feeling a bit concerned that it doesn’t have an official name if that makes sense. It’s all been it could be a AN but as it’s not the general shape they haven’t said that’s definitely what it is. Don’t want to over think and at the same time I’m like am I asking enough questions. It’s all new and weird and strange.