Growth after 10 years

[MikeRad]

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. 

[DanFouratt]

Mike,

Each decision is personal and is yours not the doctors. I pulled the trigger last fall. I could have stayed in the wait and watch, but I did not want my issues to get worse (SSD and Tinnitus only today).  You can see below the growth history.  Even with the starting and stopping, I still went forward.  If I asked to be left in wait and watch they would have.  Do you is right for you.

Dan

[donjehle]

Hi MikeRad, and welcome to the ANA Forums! Thanks for posting your excellent post!

Dan is correct. It is your brain and your decision. I could never fault anyone for wanting to pursue treatment, nor would I ever criticize anyone for wanting another six months to see if the growth is continuing or not. I wish you all the best as you make that tough decision.
Don

[MikeRad]

Thank you for the feedback Don and Dan.  I have read your history Don and many others. Many folks on this board, which is a wonderful resource by the way, who have shared stories where they decided to watch and wait.  Some have monitored for a long time and still have serviceable hearing (like me).  Other waited and lost their hearing before treatment.  On the other hand many have opted for treatment while they had serviceable hearing and lost it after Gamma knife.  There are no guarantees.

I did a lot of research about 10 1/2 years ago when I was diagnosed.  At the time, I consulted a number of specialists and decided until there was some growth I would do nothing.  I have paid attention to the research and 'lurked' in this site and the forums for a long time. I have decided that I am going to have Gamma Knife.  My tumor is still small but grew significantly in the past year.  I have excellent hearing now but having more tinnitus in my AN ear and some minor balance issues in recent months.

As you both said it's a personal decision and I am comfortable with my decision.  Taking a realist approach, I have about a 95% chance of tumor control if I have Gamma Knife and likely a bit better than 50% chance of retaining serviceable hearing with or without GK.  There are currently good margins to make sure my cochlea gets <4GY of radiation.  Some studies indicate a better outcome with cochlea getting a low dose.  Like most things, nothing is certain but it makes me feel better knowing I can be proactive as my AN has grown closer to my cochlea this year.  Lastly, I'm expecting my hearing to decline and that I will end up SSD eventually.  If I'm wrong that's great.  If I'm right, I'll still be sad but as I have read there are things which can be done to help cope.  I've made my decision and at peace with it.  I am fortunate to have the support of my friends and family and as I mentioned before this forum has been a great asset as well.  Thank you!

[donjehle]

Thanks, MikeRad, for sharing your decision.  It makes a lot of sense to me.  I lost my hearing while waiting, but the truth of the matter is that I would have lost my hearing even had I chosen to have GammaKnife because I lost it within a couple of months of my diagnosis.  So, my hearing would have been lost before any treatment anyway. 

But I commend you for the serious thought you have given in making your decision.  I just hope that you will keep us updated on your treatment and how things go for you afterwards.

Best wishes on your journey!
Don

[DodgeAU]

Good to hear you made a decision, MikeRad. I had GK myself 2 1/2 years ago and doing very well. Prior to GK, I lost my hearing on the AN side so there was nothing to lose anymore. I also had a small dose of radiation to the cochlea. My only issue post GK was facial hemispasm after 6 months and lasted for about 9 months before it disappeared. I also have mild tinnitus but I barely notice it now. Keep us posted with your treatment and recovery we want to hear how did you go.

[DanFouratt]

Just checking in, do you have a date and location?

Dan

[MikeRad]

Hi Dan. Treated by Dr. Warnick at Jewish Hospital in Cincinnati earlier this month. Overall a good experience. Hardest part was the steroids which made sleeping difficult.  The only post treatment change I've noticed is a bit more tinnitus on my left, AN, side.  It's generally mild and I typically only notice it when I think about it. I've be fortunate that my tinnitus has always been mild enough I can ignore it and it has no impact. Hoping it stays that way.   

I have a follow-up scheduled in January and was told to expect a hearing test and MRI at that time. I'll update afterwards. 

[DanFouratt]

GREAT to hear. hope all is going well.

Dan