Hello everyone. 

I was diagnosed with an acoustic neuroma at the end of 2013 after having tinnitus on one side.  The tinnitus started suddenly on the right side and was quite a shock.  It has never subsided but I don't notice it much any more.  fortunately, I have been able to tune it out except when I think or talk about it.  I have tinnitus on the left but not as loud.  It may be more prominent recently but not really sure.

When I went to the ENT in 2013, he said that the tinnitus on my right side could be caused by a tumor and we should get an MRI to rule it out.  The MRI came back with a 4mm x 5mm AN on the left.  From everything I've learned, it's not possible for tinnitus on the right to be caused by an AN on the left so I presume they are unrelated.  My AN showed no growth from 2013 through my last MRI in 2022.

So I had a follow-up MRI last week and it is now 4mm x 6mm.  My prior MRI was done at the same hospital, on the same 3T machine (I asked when I was there for some reason), and read by the same radiologist who noted the growth from the prior MRI.  When I look at the scans myself, I can see the shape has changed a bit for the first time.  My hearing in both ears is still normal except for the past two years (May 2023 and May 2024) where the audiologist noted mild hearing loss at high frequencies (8000) in the left ear. 

I feel I have some really mild balance issues.  I notice it leaning backwards and looking up.  Occasionally I'll notice I'm a just a bit unsteady at other times.  No vertigo nor dizziness though.  If I didn't have an AN, I probably would think nothing of it.  Curious if others have noticed this before? 

I have a follow-up with my Neurosurgeon next week and not sure what to expect.  I've always thought if I had growth or increase in symptoms I would have GK.  Should I expect him to push for GK now or continue to W&W to see of there is additional growth in the next 6-12 months?  For others in a similar situation what did your doctor recommend and what did you end up doing?  In the end, I expect I'll lose serviceable hearing in my AN ear eventually either by waiting or after GK.  After reading so many posts, I feel I've been really lucky with mild symptoms to date.  Most likely because my AN was discovered before I had any noticeable symptoms. 

Thank you for taking the time to read this and I appreciate your thoughts. 

Thank you, both, for your replies.  I tried one of the Shokz one, and it was okay, but I got tired of charging it all the time.

Hi maryblair, and thanks for posting on the ANA Forums!

I also have a very small acoustic neuroma and had horrible vertigo and dizziness.  I had fallen down numberous times and had to walk with a cane.  But that was when my AN was first diagnosed.  I went to a vestibular therapist (not a regular physical therapist), had a few months of treatment, and I have not had any more dizziness since, and I don't use a cane anymore.  My last MRI showed no growth. 

I am not a medical doctor, but my understanding is that acoustic neuroma patients can have occasional worsening symptoms even though the acoustic neuroma is not growing.  So, we are told not to panic if we have occasional reoccurring symptoms.  The MRI is the definitive answer to the question of how fast or slow the AN is growing or whether it is staying the same or even shrinking.  Since acoustic neuromas typically grow very slowly, you probably can wait until your next scheduled MRI, especially with it at only 4mm.  But, if you have any concerns, I would share them with your healthcare provider.

Best wishes on your journey!
Don

Oh good for you! My doctor said it was a no go, due to the shadow they cast on MRI, but now I'm going to ask again. Cannot wait to hear about it.

Hi everyone - as promised just checking in to update anyone who is following this thread and may be going through what I am going through.

I am over 2 years post CK and about 22 months since my first facial contraction/spasm/cramping - if you go back to my prior threads, you can see all the treatments I have tried. Well, sad to report, I am still going through it.  Thankfully they have become "weaker."  By this I mean shorter in duration (they used to last up to 2 minutes and now they are under a minute) and less intense (I used to not even be able to keep my eye open or my mouth from contracting).  Now I can "fight" through them a bit.  So, I guess this is good news?  They still occur almost every day - same triggers - exercise, sneezing, yawning, social interactions, etc., etc...).  My brain MRI that focused on the nerve showed....nothing. So no help there.  MRI's don't really show the nerve and nothing stood out.  I have seen literally over 10 different specialists and have had 6 MRIs since the CK and not one doctor has ever even heard of or has seen my symptoms. 

If anyone wants to chat or discuss what they are going through, please reach out to me (I have been through a lot and have tried everything so I may be of some help)!