Just checking in

[tonydavies]

Hi all.

I was diagnosed with AN about a year ago. It was pretty small, 3.5 x 3.5 x 7 mm. I've had 2 MRIs since then as it's grown about 1mm each time. The consultant I am with says it's nothing to worry about yet, but if it keeps growing I'll have to deal with.

I have the typical symptons, feeling of fullness in the ear, slight hearing loss, tinatus and bouts of vertigo.

It may sound trivial, but my biggest fear is losing hearing in the ear as the result of treatment because I spend at least 20 hours a week listening to music and whilst I will still have the use if one ear, it won't be the same experience.

Anyway, I'll have another MRI in 6 months and see where I am then.

Tony

[6625]

Hi Tony my AN was 28mm I had operation 2 years ago to debulk it ok was successful but it left me completely death in one ear .it is rather frustrating at times but it has points when my hubby snores I can just turn over and I don't hear it lol.

[Kristyll]

Best to await next scan but if you need surgery we all find single side deafness is not insurmountable. Good luck

[bypass]

Hi, many musicians have chosen fractionated radiosurgery approaches to minimise hearing loss. Although not a musician I had Fractionated Stereotactic Radiosurgery in the USA 20 years ago for the same reason. This did indeed maintain my hearing at pre treatment levels for a further 12 to 15 years. The more recent deterioration is probably down to the natural aging process rather than the AN or its treatment. Sadly, despite a considerable body of evidence, Docs in the UK generally do not support this approach and even where they have expensive Cyber Knife equipment which was specifically designed for this type of treatment the refuse to give it. You can read about my experience here anarchive.org/chris.htm - If you want to try the treatment I had you may need to go to RadioSurgery New York who continue to provide it - See rsny.org/Acoustic_Neuroma.html

[tonydavies in reply to bypass]

Hi, my surgeon is talking about gamma knife to arrest the growth. I won't do anything until I am sure it is growing large enough to cause me issues though.

[bypass]

Wise move Tony. I have a friend who has been on watch and wait for over 15 years now. Still no sign that he needs treatment, so he is cautiously optimistic that his AN will be with him to the grave!

[Flossie74 in reply to bypass]

Me too I have had my an for 15 Years .Hasnt grown.. Scan every 3years.Due next year!

[anan88]

Hello - my surgeon went in behind the ear to try and keep some hearing, which was partly successful, so don't worry - it may never happen, or be years away, or Gamma Knife could do the trick and your hearing isn't even affected. What seems important now may shrink to "nothing at all to be concerned about" over time. Good luck!

[JDWYER1980]

Hi, I was diagnosed with a 9mm x 4mm intracanicular acoustic neuroma back in Feb 17. I had an mri in Feb 18 and fortunately there was no change in size. I have another mri scheduled for two years time. Hope this helps. Damian