Started growing again?: I have had an... - Acoustic Neuroma ...

Acoustic Neuroma Support

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Started growing again?

LisaBod profile image
2 Replies

I have had an acoustic neuroma since 2011. For the past month, I have had a quite painful earache, more noticeable tinnitus (popping noises and whistling) a fullness in the ear and swollen glands all on the right hand side. Sometimes the earache gives me pain in my jaw and a headache again just on the right side.

I called the doctor, who prescribed antibiotics in both tablet and ear spray form. I took the tablets for the full 5 day course and used the spray as prescribed.

The symptoms haven't gone away. I went back to the doctors and had my ear examined. The nurse said it was completely clear and that she wanted to refer me to ENT.

I received my letter to book an appointment and there are no appointments available. Due to the vestibule schwannoma being in the same area as the pain and other symptoms, I wanted to check I was ok to wait for an appointment becoming available.

I am worried that my tumour has started growing again. I had gamma knife in 2012 and a small growth spurt in 2019

I look forward to hearing from you.

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LisaBod
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Tabbycat profile image
Tabbycat

Hello LisaBod

I had a right side acoustic neuroma diagnosed in 2014 and was on wait and watch for 4 years with annual MRI scans. I was told that these type of tumours were very slow growing, but each year the tumour grew, so I had Gamma Knife Surgery in 2018. in Leeds, England.

I had an MRI last year (the first after the surgery) which showed that the tumour had not increased in size and may have slightly reduced in volume. This year my annual MRI in April was cancelled due to the COVID-19 pandemic and I eventually got called to go to have a scan on 10th June - now I just have to wait for the results.

I'm guessing you are still in touch with your consultant and are having regular MRIs? I was given the contact details of a specialist nurse, who works as part of the skull base team at the hospital where I've had all my tretment - do you have something similar? I've found she's been great at answering questions such as yours. If not, maybe try the consultant's secretary.

Hope all goes well with you,

Tabby

LisaBod profile image
LisaBod in reply toTabbycat

I had emailed my consultants secretary and one of the doctors called me today. I am booked in for a scan. 🤞🏻🤞🏻

I normally have a scan each December.

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