Telephone appointment

[Sheryl5013]

I’ve recently been diagnosed with an AN in CPA system with extension into the IAC measuring 20 mm in length and CPA component measuring 14 X 12 mm.I’ve been sent a letter with a telephone call appointment with specialist from St George’s… is it normal to have a call appointment and can I ask you all what sort of questions I should be asking?TIA

[Alison_L]

Hi Sheryl. I'm also under George's (or was until they referred me to the Royal Marsden for radiotherapy). I assume you've only had one MRI so far? In which case there's not much they can do until they do a second one, maybe 6 months later to see if your AN has grown. I suspect the phone appointment is really just to tell you this. Once they have the 2nd MRI results, they will have an idea of what treatment is appropriate. If there is no significant growth, they may keep you on Watch and Wait. Both of my appointments were face to face, but maybe they've changed that this year. Do have a note of your symptoms ready to tell them, as this may affect the treatment. Hope it goes well xx

[Sheryl5013 in reply to Alison_L]

Thank you so much for your reply 😊

[Sheryl5013 in reply to Alison_L]

Hi Alison

Can I ask you what size your AN is and what symptoms you have/had?

I’ve had one MRI at present and my symptoms are balance issues and hearing loss with sensory overload in noisy spaces.

How did you find the radiotherapy and did any symptoms worsen after?

[Alison_L]

I went mostly deaf in my right ear in Nov 2020, with some tinnitus (white noise). Everyone assumed it was wax, and pharmacist, then GP, gave me increasingly strong wax softener. Given the year, no one would actually look in my ear! I finally got an ear syringing appt at Specsavers in May 2021, when they took one look and said, there's no wax! I then went back to the GP (for a face to face) who agreed, and referred me to audiology at St George's. I saw them in Sept 2021, and after various hearing tests, they sent me for an MRI in Feb 2022. At that point a 1cm AN was diagnosed and I was referred to Neurosurgery. They said watch & wait for 6 months, when I had a second MRI. By then, a cyst had grown on the AN (my lodger had a lodger!), and the whole thing was now 1.5cm. Neurosurgeon wanted to to cut it out through Translab surgery, but I refused this, at which point he referred me to Royal Marsden.

RM did a 3rd MRI in Dec 22, when total had increased to 1.7cm, and I had Fractionated Stereotactic Radiotherapy in Jan/Feb this year (25 short bursts of therapy over 5 weeks Mon-Fri). 4th MRI May this year - the radiotherapy had shrunk the cyst, and the whole thing is back down to 1.2cm! Everyone very happy and they'll do another MRI next Feb

The only side effect of the radiotherapy was tiredness, but I think that was mainly caused by having to get public transport up to Chelsea every day for 5 weeks! My hearing and tinnitus haven't got any worse since my first hearing test in Sept 2021. Audiology at George's are still trying to find a hearing aid that helps in noisy spaces - I'm a dinner theatre actress and have to chat to guests sitting on tables of 10, with up to 10 tables, so it does get noisy. I'm currently trying a CROS aid, which passes sound from the right aid to another on the left. I've worn it this weekend, and while not perfect, it has helped. Ordinary aids just increase the volume of the distorted sound going into my bad ear.

I've seen a physiotherapist twice so far at RM to test my balance, which seems to be about 90%. I occasionally swerve a bit and crash into door frames or walls, but I can live with that. Physio has told me to contact her if anything changes before next year.

[Sheryl5013]

Hi Alison

That all sounds quite positive ..hopefully it all continues and your lodger doesn’t misbehave 🤞Im steering towards radiotherapy more but that might change after initial appointment with specialist.Thank you for sharing 😊