Acoustic Neuroma

[Jowita1991]

Hello

I was diagnosed with Acoustic Neuroma at October 2022. It was 8mm at first scan and then grew 3mm within 3 months. After my third scan they said there are no changes to size.

I have appointment with ENT surgeon on end of July.

Can you please share your experience with small acoustic neuroma? Also, What treatment you went with?

I am really afraid that doctor will choose radiation.

[whitefishbay]

Hi I was diagnosed with an Acoustic Neuroma two summers ago. Mine is @ 5 mm. I have had 3 MRIs and they don't think it's grown much. The consultant said with the tech they have they don't think it has grown (next MRI in a year). The consultant (Charing Cross Hospital London) said he suggests watch and wait as it is so small. He said if I wanted to I could have radiostatic radiotherapy (gamma knife). Of course, there could be side effects. They would never do surgery as I am 66 and it is very small. Good luck. A bit daunting but the best thing to do is read up on it. I went on Acoustic Neuroma Association website in the USA and they have lots of videos in their library. You don't have to be a member to access them. Have a look. anausa.org/

[Jowita1991 in reply to whitefishbay]

Thank you, I will check the website. 😊

[DDwyer1]

Hi, I was diagnosed 6 years ago at 38 years old. Mine was 9mm when diagnosed. I am currently on watch and wait. There was no growth in the first 5 years of scans and I had a scan early June this year. I am waiting on the results. When I was diagnosed 6 years ago the consultant mentioned radiotherapy if it was showing growth as it is classed as small. I don't tend to think about it much in between scans but I do around the scan times. My symtoms are tinnitus and high sensory hearing loss. Hope this helps. Damian

[Jowita1991 in reply to DDwyer1]

Thank you for sharing your story. I hope the result of your recent scans will be good.

I think it’s stressful not knowing what doctors will decide and do etc. I hope they will choose to watch and wait, but on other hand AN cause my daily headaches and I want them gone.

[Bad1]

Hi Joweta1991, In reply I am picking up your anxiety, which is understandable. You state that you are afraid that Dr may choose radiation however treatment for AN is not exact science and you do have options here as the patient , eg you may want to consider what is best option for hearing preservation esp if you are young. Every one’s situation and AN is different lots of factors are involved one of the most important is rate of growth because no treatment can reverse the symptom you already have

If you are under NHS , the charter states you have right to second opinion and reading up on treatment plans and international research may assist you, but it is personal choice as many people are happy to trust in the expertise of their allocated team

I wish you all the best with your consultation

[Jowita1991 in reply to Bad1]

Thank You for reply. I am mostly afraid of the mask they put on you for radiation, I don’t think my claustrophobia will allow me to do it.

I will make sure to discuss all the options with the consultant and bring up my anxieties.

Thank you 😊

[Debra1963 in reply to Jowita1991]

I understand your anxiety about the mask as I felt the same. It is quite snug because its important your head is very still during treatment but its perforated and there are holes for your nose and mouth which help. I practiced some breathing exercises beforehand which helped me keep calm. It's also the anxiety of the unknown isnt it. Good luck.