Author Topic: Any opinions on small ANs from more long-experienced folks? (39 years old)  (Read 1153 times)

mattel226

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Hi All,

Quick summary of journey thus far.  Back in 2021, I woke up with strong tinnitus/single sided hearing reduction and sought a visit with an ENT.  They did a hearing test and agreed I had slightly diminished hearing in my right ear.  After a bit of song and dance I had an MRI that identified a 4mm AN.  After some weeks, the symptoms seemed to diminish, and they seemed to come and go since then.  Fortunately over the 2 years, I've had 2 add'l MRIs, each showing no growth.

My most recent MRI was in April - so 4 months prior, to about a month ago, when I experienced an escalation of new tinnitus, fullness and hearing reduction.  Fortunately, no functional consequence to my face or balance yet, outside of some uncommon positionally affected imbalance.  My hearing in the bad ear is still mostly there - I'm not deaf in that ear yet.

I currently under the care of Dr Yaron Moshel in Morristown NJ, and his original advice (listed in appointment summary) was

Quote
"we also discussed the role of
stereotactic radiosurgical treatment for enlarging lesions and we discussed the role of fractionation in
order to maximize hearing preservation however at this position distal in the canal I think the likelihood
that he will develop hearing loss from any radiosurgical procedure is relatively high and instead I think
he is better served with the natural history of the lesion."

At the moment, the symptoms are still mostly a nuisance and not significantly adverse to my quality of life - but I need to weigh the costs/benefits of treatment, especially in the short and long term.  I'm sure another MRI is indicated to see if my new symptoms stem from tumor progression - but regardless, I'm curious to hear experiences from anyone with similar history. 

An optimistic part of me says, "I can beat this - it's single sided, and I'll ideally still have hearing in my left ear, even if I do radiation therapy" though the pessimist in me says, "I'm doomed to poor hearing, facial weakness, balance issues among other things".  Hope to hear from you!
« Last Edit: September 28, 2023, 09:51:14 am by mattel226 »

donjehle

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Re: Any opinions on small ANs from more long-experienced folks? (39 years old)
« Reply #1 on: September 30, 2023, 02:44:27 pm »
Hi mattel226, and welcome to the ANA Forums!

Mine is a small acounstic neuroma, and the counsel I received was to watch and wait.  I'm almost deaf in my bad ear, but neither surgery nor radiation would improve my hearing.  I have constant tinnitus, but, for the most part, I have learned to ignore it (at least much of the time).  There is little risk of having facial weakness unless I opt for some kind of treatment.  I have regained my balance, so there is no urgency to do anything other than to keep watching it.

I wish you the best in your journey!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

DanFouratt

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Mattel226,

As you can see below my tumor is a little bigger and it had one growth spurt.  I saw the decision process as two steps.  First do you want to leave the watch and wait status?  When that gets to "yes"; step tow is how do you want to treat the tumor?  After the growth spurt I decided to leave the watch and wait.  I was only having tinnitus and hearing loss at the time and no balance issues.  I did not want to have the surgery until after my son's wedding in May.  The surgery was originally scheduled for July but got postponed.  It gave me time to research all options in depth.  I ended up going with Cyberknife a little over two weeks ago.

My understanding of radiosurgery is there is very little chance of facial weakness and it does not damage hearing.  I am not sure about the later.  I had poor hearing going in and after if dropped to zero but is coming back. The doctor said this was expected do to the swelling the the area from the radiation. 

If you have other questions I can share more about my decision journey.

Good Luck and stay strong,

Dan

Dan Fouratt             63 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23             TBD Not Scheduled

DodgeAU

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Mattel226,

Welcome to our club. Your 4mm AN is within the small category and also you do not experience many symptoms. Most people here go for the watch and wait if in the small category and symptoms are minimal. I'm glad that you had no growth in 2 years time that is very positive.

Mine has grown from 6mm to 18mm in approx 4 years time of watch and wait. I decided to go for radiation treatment as it was growing at a fast rate. I already lost 100% of hearing on the AN side when I did the radiation treatment. I wish I could have done the treatment earlier in my case.
Sep 2023: AN shrunk by 3mm
Jun 2023: Hemifacial spasm disappeared
Oct 2022: MRI shows no growth, hemifacial spasms started
Mar 2022: GK treatment at Peter Mac Melbourne
Dec 2021: 18mm x 10mm
Oct 2019:  12x7 mm, Watch mode
Mar 2019: 7.5x5.5 mm, Watch mode
Aug 2018: Diagnosed 6x4x4 mm AN left