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Shaky but not shaken

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PaulW:
You may want to enquire about a non invasive treatment that destroys the balance organ on your AN side. Basically a gentamicin (antibiotic) injection directly into middle ear....
In surgery they cut the balance nerve anyway... which is why your balance eventually improves after surgery.

So this would allow you to stay on W&W hopefully keep your hearing, avoid the risks of surgery, and avoid the unknown potentially long term balance issues with GK or W&W.

I don't know the risks or consequences of the treatment, but it would seem to me that this treatment could potentially get you back in the air without the risk of further random balance issues.

Citiview:
when I have asked doctors about the reasons to treat vs watch/wait the answers I have gotten include:

Any or all
1. Growth
2. Balance issues
3. Hearing changes

In fact at my very first consult over three years ago the doctor said watch/wait was fine as long as I wasn't "seeing the room spinning"
So far I haven't experienced that but I imagine it's very difficult.

Truthfully, all of the decision making is patient preference  - with consultation from experts.

Skebenga:
Well, it’s been a year of wait and we did the watch part yesterday. MRI shows my gizmo has now more than doubled to 2.2 x 1.3 cm. My consulatant has referred me to see a neurosurgeon at the Hermitage in Dublin and I have set up an appointment to see another for an additional  opinion. I’m a bit shocked by the growth (I was hoping it was static) although, to be honest, my symptoms of imbalance and fatigue were only getting worse and my hearing had noticeably deteriorated, but I am wondering if there is a point where it is too large for Cyberknife, which my consultant is recommending.

golfguy49:
Some who have had successful Cyberknife may disagree, but I tend to agree with the 4 surgeons I have seen who all say that I am too young (47) to do Cyberknife.  Cyberknife, in the case of my surgeon(s), seems to be reserved primarily for the older folks where immediate removal of the tumor is not necessary (slower growth, smaller in size) - really as a tool for the aged to avoid going under the real surgical knife and just stop the tumor in its tracks.  The tumor may continue growing and then surgery later in life becomes much more difficult after the tumor has already been zapped with radiation.  Also, if complete removal via surgery is necessary, it is much better to do it while young and also not risk conversion to cancerous tumor by using radiation (low risk).  Given your rapid growth rate, it is surprising to hear they might consider Cyberknife, as I am sure that is the opposite of what my surgeon(s) would say...especially given how symptomatic you are with balance, hearing, and fatigue issues.

There are just my personal opinions after speaking with 4 top surgeons over the past 6 months regarding my own situation.

Alyssa:
This is a AN pilot post, he eventually flies back to the sky. His story is inspiring me.  You may contact him directly through message or email.

https://www.anausa.org/smf/index.php?topic=23188.0

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