Newly diagnosed with AN

[DorsetTony]

Hi, I was diagnosed with a 2cm AN in July of this year in Dorset County Hospital with promise of a referral to Southampton General. After 6 weeks without the expected letter arriving I contacted Southampton to be told that they had no record of referral so I had to go back to DCH to chase them 😐. This I did and I finally have a first appointment with the Neurosurgical team in Southampton on October 18th which is good.

I now have a new symptom as well as the standard hearing loss, tinnitus and imbalance of numbness on the right hand side of my face (a bit like after having a tooth out). I did call the team at the hospital to advise but they just took the details and that was it. Has anyone else had this and does it go away? 🤞

Thanks , Tony

[Sheryl5013]

Hi there

Yes I have all those symptoms.I think they are quite common depending where your tumour is positioned.If you have facebook there’s a group to join called British acoustic neuroma…you will get a lot of information and support from everyone and they’re always active.Good luck 🤞

[DorsetTony in reply to Sheryl5013]

Thanks for your reply Sheryl, I'll have a look 👍

[Poppies4life]

Hello, I too have had those symptoms, my tongue on the right side felt like it was permanently recovering from anaesthetic following a visit to the dentist. It lasted for a long time, months. I was concerned and contacted my skull based nurse to discuss who said it wasn’t indicative of any changes and didn’t have an explanation. Was told MRI scan would show any changes, I am due another one in Dec 23. I have just joined BANA (British Acoustic Neuroma Association) so I can hear other peoples experiences. No fun having a AN and has impacted on my confidence and ability to enjoy going out socially as everything takes so much more effort. I hope your symptoms do go away but all sorts of thoughts are consistently going around in your head.

[DorsetTony in reply to Poppies4life]

Thanks for your reply Poppies

I've joined the Facebook group and also looked at BANA website which is full of really useful information. I've been trying to operate as normal over the past few years but as the symptoms increase it's becoming increasingly difficult and I guess I'll just have to get used to them but you're right, going out and the social side of life is really hard to do now.

All the best with your scan in November 🙂

[Rich806]

Hi Tony how did the appointment go on the 18th, who did you see?Rich

[DorsetTony]

Hi RichSorry I should have updated this, my appointment was postponed until 6th December unfortunately, which is annoying but not much I can do about it!

Thank you for asking👍

Tony

[Rich806 in reply to DorsetTony]

Good luck with appointment for Dec, I have had two appointments at Southampton, Mr Thomas and Mr Shenouda, now on waiting list for Surgery

[DorsetTony]

I'm due to see Mr Thomas but not sure if it will be him or one of his team? I hope you don't have to wait too long for your surgery

[Rich806 in reply to DorsetTony]

My appointment was with Mr Thomas in August, and then I had another appointment at the end ofseptember with Mr Thomas and Mr Shneouda and William who is skull base specialist nurse Between these appointments I was called up for CT scan at Southampton.

Having been diagnosed in May after 2 MRI scans, I thought things have moved on quite quickly, but I think the wait for surgery will be lot longer.

Noticed on some paper work that I am a priority 4 waiting list whatever that means.

Mr Thomas is arranging for another MRI in Jan 2024, to keep a eye on cyst which is in AN

It's just all the waiting isn't it, I felt better now that I am in the system.

[DorsetTony in reply to Rich806]

Yes there is so much to take in with these little blighters isn't there!Hearing loss, balance issues, headaches, mood swings and also the psychological effects of being told you've got a Brain Tumour.

You're at a more advanced stage of your treatment than me so I look forward to updates from you Rich 👍

[MattBusby]

Hi Tony,

I am 72 years old, my AC was 2 cm, I had Radioactive Surgery at Christie’s M/C. March 22. September 23 I had my annual scan, I had a chat over the phone yesterday, my A/N has shrunk by 30%. My symptoms are deafness in my right ear, tinnitus, balance issues, which result in being tired.

I have tried 2 types of hearing aides, but after trying hearing aides, talking to fellow members at BANA, I realise that I have to pace myself, I cant do as much, but the Radiosurgery was a success.

Join BANA , talk with as many as possible, there is very good support.

Good luck. Mike Bradley. ( Matt Busby)

[DorsetTony in reply to MattBusby]

Thanks for the reply MikeSounds very similar to me, I'm slightly younger (64)and still working but I sit on my backside in front of a screen all day so no real issues, although everything takes longer than it used to!

I haven't got a hearing aid yet because I wanted to see how long the treatment process was going to take and see what the outcome afterwards was.

Pleased the radiosurgery was a success and I hope the little bugger stays away in the future 🙂

Tony

[Maybaby61]

Yes I had the facial numbness after surgery I still have it but learning to live with it. I have accepted it as part of me now

[DorsetTony in reply to Maybaby61]

Yes I guess it is something you learn to live with, it's like going to the dentist every day! 😐