Author Topic: Are you aware of any published studies summarizing prevalence of side effects?  (Read 839 times)


  • New Member
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Hi team :),

I have a 13mm AN with essentially no symptoms except tinnitus, and the AN appears to be growing.  Since it is currently on the smaller side and since I am healthy with no significant symptoms, I want to be proactive in getting this addressed before it starts creating problems.  Doctors have recommended retrosigmoid, though I also want to consider CyberKnife.  However, as we all know, treatment itself can sometimes create its own set of problems post-treatment.  I have read a large number of people's stories on this forum, and they are all informative and appreciated.  Nonetheless, they are all over the anecdotal map from "ran a 5K race 2 weeks are surgery" to "feel like hit by a bat in the back of the head years later".

Are you aware of any published larger scale studies that show the prevalence / percentage of patients who got specific side effects after specific types of treatments?  It would be great to see aggregated/summarized data with a matrix that shows this information on a larger scale.

Thank you for any help and pointers.



  • New Member
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  • Posts: 4
Angela from ANA provided me with some terrific resources:

ANA Patient Survey Reports:

Current results from the Patient Registry (good for everyone to participate in, if you have not done so already!):

Both involve self-reporting, are not randomized, not peer reviewed, etc.  Nonetheless, they provide some very helpful information in aggregate, and I have not seen anything else yet in reviewed publications that provides this type of information.  Mayo Clinic is apparently performing something similar as well (, though it appears to be in process and not available yet.

If you know of any other good sources, please share them as well.


  • Jr. Member
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  • Posts: 81
Hi - each of us has our own experience, and like you say those are all over the place.  I would keep in mind as you do your research, how recent each experience is, as it seems that both surgery and radiation options have come a long way in the last few years.

My own experience was that the surgery is no walk in the park, but after a few months, I have less symptoms than I had prior to surgery.  Also, there was no pain that I couldn't manage with the prescriptions they gave me to manage with.  (I think 3 or 4 times total I was watching the clock for half an hour or so before taking something).  I needed longer off work than they originally told me - 14 weeks vs 7, but I couldn't return while experiencing fatigue as I travel out of state and must be on the ball the entire time I'm working.  I've been back a couple months and fine.

I couldn't advocate one treatment over another, but I wish I'd know about my tumor earlier (it was 3.1 cm at diagnosis) as I think nixing these things early should make treatment easier and more likely to succeed.  You've found the biggest body of information on these tumors on this website - lots of bedtime reading that should help you form your own opinion as to which way you should go, so poke around, watch the webinars, and make a list of questions for your physicians.

Good luck!
Strange tastes, facial numbness symptoms led to MRI 3/2019: 2.4 x 3.2 x 2.6 cm VS on left side
Left hearing went 4/2019
Translab 06132019:  1.4 x 2.4 x 1.6 cm residual stuck to facial nerve & brain stem
MRI 12122019:  1.6 x 3.2 x 2.3 cm
Translab 01132020:  0.1 x 0.75 x 0.57 + 1.5 x 0.5 cm
GK next