Newbie - contemplating treatment options - Radiation vs Microsurgery

[orgo]

I am glad that there is such a nice support group to discuss/share topics related to AN/VS. My queries are below. I appreciate if members of this group could review and share their opinions.

Background: I have been having Tinnitus since several months but never realized it is a symptom until my visit to ENT in December 2024 where I was diagnosed with only 40% hearing capacity in my right year. MRI was done in Feb 2025 and discovered tumor in my right ear with a size of 10.2 mm x 18.2 mm. I have met with both radiation doctor and neurosurgeon (individually), and discussed my queries. I wish I had found this forum before I met them, so that I would have my queries well organized. Nevertheless, both doctors gave their inputs, and I tried to make a short summary below.

Radiation doctor: Cyberknife radiation. It will be an outpatient procedure. Should be able to get back to work immediately. Tumor stays inside, growth will be restricted but need to see in subsequent MRI scans. Tinnitus would still be there. Can't improve hearing capacity, possible to loose hearing. Chances of facial paralysis  2%. CK is done using the recent MRI images which means, there is no live-view of tumour during radiation.

Neurosurgeon: Microsurgery, not sure which one (sounded like suboccipital cranitomy). It will be in-patient procedure, procedure could long 3-5 hrs. 1-3 days of observation in hospital, can be returned to work afterwards. Tumor will be removed and can do genetic analysis to learn more. Can't promise Tinnitus will be gone. Can't promise hearing will be preserved. Chances of facial paralyis 10%. Since it is surgery, there is live-view of tumour and would be removed.

Both doctors told I could choose either of those options and they said it as if it the procedure is quite common (not critical)

Queries to members:
1. Either for radiation or surgery, how critical is the experience of the doctors? How can we collect information on the doctor's experience and success rates? or is the treatment process is simple that the experience doesn't play a critical role?
2. Considering the size of my tumor and my age, which one is an optimal approach? My priorities are as follows (i) No facial paralysis > (b) preserve hearing capacity > (c) get rid of Tinnitus.
3. If I happen to choose radiation, and the tumor regrows in the next few years, can I then choose microsurgery?
4. Are there any known complications of carrying the dead tumor (after radiation) besides reduced hearing capacity and tinnitus?
5. Are there any publications that studied recovery of patients opted for CK vs microsurgery and how their quality of life have affected?

Sorry for the long post. Thanks for your patience. Looking forward to hearing your responses/advice/thoughts.

[mwatto]

Hi I had Cyberknife 6 years ago and live a normal life. My AN is half the size it was. But how old are you? I was in late 50s and my AN was larger than yours though my friend (not a member) AN was the same size and instead of three factions she only had one session and doing well too. She was in her 40s. I was told if radiation fails then they would redo just those cells...however I do not know which I would choose myself. I suggest watch a few videos in the webinar library and inform yourself too. I live in Perth Australia and ANs not that common it seems - we do not eg have Gamma. Feel free to message me .

[DanFouratt]

Dear Orgo,

Welcome to the group.  Sorry you are here but this is a great resource.  One thing I discover in my journey was surgeon recommend surgery and oncologist radiosurgery.  Just a reminder I am not a medical professional just another patient that went on the same journey.

One thing I would say is ensure this is not their first time doing the surgery, another way of saying a high volume place is better. UCSD did a webinar on that within the year.  I simply asked my doctor about their number of surgeries.  I was at a teaching hospital and asked if you or your resident will be performing the surgery. One of the doctors I was pestering with many questions looked at me and said, "you missed the most important one, this is not my first rodeo."
There is also resources here for finding Doctors.  Like Michelle I went CK in the end.

Not sure of your age, I was was 61 when I found out, had it irradiated at 63.

With respect to your priorities all paths have potential issues and potential bad outcomes.  There is no guarantee with this tumor regardless of what decision you make.

I went with radiation and when I told my ENT/Surgeon I said I just made you job a little harder if you need you to go in it our, he agreed. HE was part of my radiation team.  I am doing my follow up with him and not the radiologist for various reasons.  I have also heard of radiation after radiation but no experience there.  I have also hear of radiation after surgery.  So the long answer to your question is yes.

I know of no issues carrying a dead tumor in your brain.  I did not find any in my research as long as it stays dead. There is the fear factor about what the tumor really is that can play on some people's mind.

I also do not know of any detail information regard long-term quality of life. I know there is a study taking place, as I get survey question to answer every so often. Pretty sure it is from Mayo. If you need I can dig for it.

In your quick reviews of what you were told, I would question the surgeon about how long after your return home you can return work. 

I call this a decision journey, we all make it.  In my journey I put a decision matrix together to help me organize what I was hearing. (I spoke with many people before making my decision.) I have said this several times on this site, the best advice I received is when you make a decision work on making that decision work and do not second guess yourself.  I recently updated the matrix just to keep it current. If you would like to see it please email at Dan4att@gmail.com.

Good luck on your journey and if you have any questions please reach out,
Dan