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Acoustic Neuroma Support

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I'm new here...

cgalAsh profile image
8 Replies

I first noticed an issue May 2018, just thought my ears needed a clear out of wax, I got referred to ENT after a hearing test and further visits to the doctors, in 6 months, after an MRI scan was diagnosed with an acoustic neuroma.

In that time my hearing on the left side diminished pretty quickly to just faint noise, I could no longer make out sounds.

I had my second scan in July, the consultant advised that the tumour was growing faster than expected, my next scan is coming up shortly, and a meeting with my consultant early Jan. I will then be at the point of having to make the decision to undergo surgery or radio surgery so i'm reading as much as i can about the pros and cons of each.

Its been very helpful reading some of the posts on here, any advice would be welcome.

Ashley

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cgalAsh profile image
cgalAsh
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8 Replies
Kristyll profile image
Kristyll

Hi keep us posted, hope all goes well x

Jerrycat13 profile image
Jerrycat13 in reply toKristyll

What size is ur a/n. Mine is 22m. Im on watch and wait

cgalAsh profile image
cgalAsh in reply toJerrycat13

It was 14mm at last scan, an increase of 4/5mm in 6 months.

Wish you all the best.

cgalAsh profile image
cgalAsh in reply toKristyll

Thank you

Leodo profile image
Leodo

Hi, sounds like gamma knife surgery would be the best option, my wife had this for her AN 2 years ago, so far it has been effective. Keep an eye on the side effects and keep the experts updated at every stage. Hope this helps good luck

cgalAsh profile image
cgalAsh in reply toLeodo

Thank you

drdeanbellavia profile image
drdeanbellavia

cgalAsh:

You need to get Gamma Knife (GK) surgery asap, especially if the AN is in the narrow bony vestibule between the brain and ear.

There is no advantage of invasive surgery over GK surgery, which is short painless and requires little to no recuperation. I had my GK surgery in the am (18 minutes for a 15mm AN) and was home that afternoon changing a tire on my wife's van.

There are also exercises that you can do to resolve some of your symptoms before and after surgery. If you want to use these exercises click on the following link for PDF instructions and a video:

thebioengineeringco.com/ind...

Here are two messages that I received from AN sufferers who did the exercises:

1) “My AN is similar in size to yours and I had Cyberknife two weeks ago. Too early to say whether it made a difference to my dizziness (although I was told not to expect much change) but the exercises described above made a massive difference pre-surgery. I’m a cyclist and a runner so I have continued the exercises; am completely convinced that it is these exercises that have made the difference.”

2) I had an acoustic neuroma removed 6 years ago. I found your one page article on the treadmill exercises and they have made an amazing difference in my life. I am very thankful that you shared this and that it somehow popped up on my Google search early last year.

Dean

Ballantyne56 profile image
Ballantyne56

Hi,

How are you doing

Regards

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