options for treatments for very small schwannomas

[alan321]

Hello
I have a 3x3 mm AN in my right ear and it is in the modulus of the
cochlea ,
my problem is a loud alternating tinnitus which is unbearable,
I was given options of wait and do another MRI in one year
versus cyberknife
surgery is not on my list as it is located in difficult place
my hearing is almost normal in my right ear,
each specialist gives different opinion, but I am thinking of going to
CK , I am 66 otherwise healthy
does anyone has this kind of tumour
thanks

[Jakey]

Hi Alan,

I'm a 52-yo male and I also have a 3mm Acoustic Neuroma in my right ear.  It was diagnosed in Oct 2017.  I'll be going for my second MRI this March (six months) to see if it's grown.  Interesting you were told to wait 1-year.  I've just started taking a daily, low-dose aspirin on the advice of my doctor.  It has been shown in some cases to slow or even stop tumor growth, but I realize that's a long-shot. 

As for the tinnitus, I think mine is pretty bad too, although I really have no idea how it compares to other's.  I find it very hard to explain to my wife & kids just how bothersome it is.  As you know, it just rings 24-hours a day, 7-days a week, this high-pitched almost electronic whine.  You would think I'd have a constant headache from it, but I don't.  Maybe I'm just used to it or I have a high tolerance for it.  Interestingly, mine doesn't really vary in pitch or loudness as your's seems to.  When it's very quiet, like now at home alone or in bed at night, it's very loud.  But then when I'm in NYC for work, the environment is often so loud I barely notice it.

You're lucky your hearing is still good.  My hearing has always been excellent, but it's starting to go in my affected ear.  Before this, I'd be the one person in the room who would hear something before anyone else.  Now the hearing in my right ear is maybe 50% of what it was.  If I'm in a crowded bar or restaurant or concert or some other large social gathering, hearing is real problem.  And from what I understand, it doesn't get better. 

My goal is to find a solution that preserves what's left of my hearing, and eliminates the tinnitus.  I'm not sure which is more important to me.  The tinnitus is terrible, but I hate the thought of being deaf in one ear, and should anything happen to my left ear hearing, well, I'd be totally deaf.  My understanding is that surgery has better odds of preserving hearing & eliminating tinnitus, especially while the tumor is still relatively small, but I'm no doctor.  I think the good news for people with very small tumors is that we do have time before a decision needs to be made. 

Let me know if you have any questions.  Happy to share thoughts & results I work towards some sort of resolution of this. 

[alan321]

thank you both

indeed my tinnitus gets louder in am , it does fluctuate
in intensity

I shall try aspirin though

aspirin can cause the tinnitus to get worse
one guy told me to take tegretol, other told me to
take gabapentin,

perhaps if some cyberknife radiotherapist can let us know
if it is good idea to start treatment early inview of small radiation
dose versus waiting long time when tumour gets larger with more
radiation causing more hearing loss !

[dollface27]

Hi, I went to a tinnitus workshop and would like to share a few things that I had learned.  They had told me to avoid aspirin and tonic water, as it can make it worse. There were some other items as well but these were top of mind.   Also, it was explained to me that typically the sound you hear is the same..it is just a change of venue that seems to make it louder.  For example going to a concert then going into your car..it is only your perception that it is louder because you are now in a quieter environment.  A good example is when you wake up in the middle of the night and turn the light on...it takes a while for you to adjust...same as with the ringing.  This has helped me a lot, as I used to panic that it was getting worse...now i talk my way off the ledge knowing it is the same and not to worry.  I find having a fan on when I sleep helps me not to think about or hear it...background noise is your best friend.   I was diagnosed in April and today I had my MRI followup..fingers crossed it hasn't grown.

Hope this helps 

[alan321]

thanks

I am glad that your tumour did not grow
do you know where about your tumour is
located, which part of the auditory pathway is it
close to the cerebellopontine angle or further
in the internal auditory canal

indeed the noise is worse when waking up or
starting the day or thinking about it, that is
the reason I am leaning toward cyberknife for this
tumour,

I learned that they can control it 95% with CK
the possibility of hearing getting worse is 35%
the chances of the noise to continue is unknown

the chances of malignant transformation is 1/1000 in 30 years
the overall patient are seeming to be better on the treatment
though , no assurances

[Joan Mingo]

I dont know why anyone would opt for treatment for a small AN. From what I have read ALL the treatments can possibly make matters worse. As far as the tinitis, it doesnt seem to go away with any of the treatments. I have 4mm tumor and dont plan to do anything unless starts to grow to a problematic size. I already have lost 75% hearing with only 12% word recognition so nothing to gain by treatment.I do have tinitis as well and some balance issues and noise sensitivities. I am seeing a physiotherapist to help with balance issues and an audiologist to try hearing aids. Started a cros aid today, so will pick up noises from AN side and transfers to hearing ear. She has told me these aids as well as others have improved drastically in the last few years and can also help with tinitis. I am just using the hearing part right now.

[alan321]

hello
I am sorry to learn that you lost significant hearing
my case is a bit different,
I still have my hearing , and the tinnitus is loud
not all people with hearing loss get tinnitus, but it is more
prevalent among them, and it is those who benefit from hearing aids
I am not sure it could be the pressure of the tumor inside
the IAC that can lead to that , as from my understanding then
cochlear nerve is very sensitive to the pressure
good luck with your device

[rodneyd]

Jakey,

In June, 2015, there was an article in the AN newsletter about research conducted by the Mass Eye and Ear Hospital showing that taking one baby aspirin per day can help retard the growth of the AN.  This research had been reviewed by the ANA Physicians panel and was recommended by them as being safe and hopefully helpful.  I figured one baby aspirin per day also has other befenicial health benefits so why not begin taking one. 

My AN grew slightly until my last MRI in July, 2017, when it was discovered that the tumor shrank by 31%.  Needless to say, I was ecstatic about the results.  Was it due to the baby aspirin regimen?  Who knows.  But I felt it was better to take the aspirin than to do nothing at all. 

Anyway, I will be very interested in seeing the results of my next MRI in July, 2018.

[Jakey]

Thanks, yes, my doctor had recommended the low dose aspirin approach and I was taking it daily for several months.  I'm going to have my second MRI when on June 4 when I have my first Gamma Knife treatment, so I guess I'll learn then if it worked.

My guess is that it didn't help me, as my hearing in my right ear continues to decline.  I'm little surprised/shocked at how quickly my hearing is worsening, given these things are supposed to be slow growing.  From what I can tell after talking to the neurologist is that my AN just happens to be RIGHT on top of the junction of this auditory nerve, and thus it's having a much bigger effect on my hearing than if it was closer to the brain.  Anyway, goal is to save whatever hearing I have left so we're gonna go for it.

[Jakey]

I dont know why anyone would opt for treatment for a small AN.

While its true a lot of people who get ANs are older, and ANs are so slow-growing that many of these folks will die of totally unrelated causes before the AN has a chance to cause any real problems, I can I think of two reasons why someone might treat a small AN:

- If it happens to someone young & active and they know that they're going to have to eventually treat it, then treating it early with Gamma Knife eliminates the need for very complex surgery and the very long & hard rehab that's typically associated with surgery.  If you wait too long & the AN gets too big, then surgery is the only option.

- If, like me, the small AN (3mm) happens to be in an unlucky location that disproportionally affects one's hearing, then surgery or GK can save the hearing.  Once you go deaf in that ear, however, you're deaf.

Interestingly, the first symptom that led me to believe something was wrong was the tinnitus.  Once I got diagnosed with an AN, my biggest concern was, "what can we do to eliminate the tinnitus?", even though I knew my hearing was getting a bit worse in that ear.  8-months later, as my hearing (and word recognition) gets worse, my biggest concern is, "what can we do to save my hearing?".  While the tinnitus is definitely annoying, it's been fairly loud & constant for almost a year now, I've found that its something I can just toughen it through.  The hearing loss, however, has had a much bigger effect on me professionally & socially.  I guess that makes sense, though, as only you are affected by tinnitus, but hearing loss not only affects you, but the people you deal with everyday. 

[notaclone13]

I found a recent  publication (2017)  by a German group that is very relevant to this topic.  ANs that are intracanalicular (IAC) are usually considered small.  I pasted the the abstract below.  I have the complete paper as a pdf file if you are interested in reading it send me a PM and I will attach the pdf.  This is a single center study, so one cannot assume that similar outcomes occur at other treatment facilities.

Long-term follow-up after stereotactic radiosurgery of intracanalicular acoustic neurinoma Daniel Rueß1*, Lea Pöhlmann1, Stefan Grau2, Christina Hamisch2, Alexandra Hellerbach1, Harald Treuer1, Martin Kocher3 and Maximilian I. Ruge1

Rueß et al. Radiation Oncology (2017) 12:68 DOI 10.1186/s13014-017-0805-0

Abstract Background: The management of solely intracanalicular acoustic neurinoma (iAN) includes observation, microsurgical resection and radiation therapy. Treatment goals are long-term tumor control, hearing preservation and concurrently low side-effects. Stereotactic radiosurgery (SRS) has evolved as an alternative first-line treatment for small AN. Here we report about the long-term follow-up of a unique cohort of patients with iAN after LINAC or Cyberknife® based SRS. Methods: In this single center retrospective analysis, we included all patients with iAN who underwent single session LINAC or Cyberknife® based SRS between 1993 and 2015, and who had a minimum follow-up period of six weeks. Patient data were analyzed in terms of radiological and clinical tumor control (no further treatment necessary), subjective preservation of serviceable hearing, objective change in pure tone averages (PTA), and adverse events rated by the Common Terminology Criteria for Adverse Events (CTCAE; v4.03). Results: Forty-nine patients (f/m=21/28, median age 54±12, range 20–77 years) were identified. Mean tumor volumes were 0.24±0.12 cm3 (range, 0.1–0.68 cm3), the mean marginal dose was 12.6±0.6 Gy (range, 11.0–14.0 Gy) and the prescription isodose was 75±7.4% (range, 47–86%). Mean follow-up time was 65 months (range, 4–239 months). Radiological tumor control was 100% during further follow-up. 17 (35%) out of 49 patients had lost serviceable hearing prior to SRS. Those with preserved serviceable hearing remained stable in 78% (n=25/32) at the last follow-up (LFU). The median PTA (n=16) increased from 25.6 dB prior to SRS to 43.8 dB at LFU. Mild adverse events were observed temporarily in two patients (4%): one with CTCAE grade 1 facial nerve disorder after 3 months, resolving three months later, and one with CTCAE grade 2 facial muscle weakness resolving after 12 months. Three patients described permanent mild symptoms CTCAE grade 1 without limiting daily life (facial weakness n=1, vertigo n=2). Conclusion: SRS for iAN shows long-term reliable tumor control with a high rate of hearing preservation without considerable permanent side effects, and can be proposed as a safe and effective treatment.

[ggc]

My understanding from consulting with neurotologists at U of Washington and Virginia Mason in Seattle, is that radiosurgery degrades hearing more quickly than observation, either through damage to the blood vessels supplying the cochlea or to the hair cells themselves. The current issue in the ANA newsletter has an article from UCSD referring to this effect as well.

If you've already lost significant hearing and are only interested in controlling growth, then radiation may be the way to go. I have a 3mm tumor and have lost very minimal hearing but I'm a professional musician, (violist), and the advice I've received from all sides is to stay away from radiation. Observation will result in gradual hearing loss over time, but statistically it should be slower than radiation. Surgery, if it went well, would be ideal but there's a 1 in 3 or 4 chance that the outcome would be immediate SSD....

[Citiview]

3 years ago Dr. Friedman, one of the authors of that current article, told me that radiation would degrade my hearing faster than if I did nothing. I heeded that advice and so far I've done nothing, and my hearing has remained stable.

And yes, statistically, the chances of hearing preservation with middle fossa with small tumors, ranges from 50-70 percent (80 for some?) but there's the risk of the surgery and the risk of immediate SSD.

[PaulW]

I believe 10 year hearing preservation rates between radiation and W&W on published data is very similar. Unfortunately many people on W&W just get frustrated and get radiation and surgery elsewhere. This leads to a loss of follow up and their data being excluded from the study.
This skews the results for W&W as progressing tumours Can be eliminated from the study.
Its difficult for researchers to factor this in, and becomes a “limitation of the study”

Is W&W better for long term hearing preservation than radiation?
It depends on which study you read. Either way it’s probably too close to call.

There does however seem to be a subset of people receiving radiation that out performs W&W for hearing preservation.

Treatment within the first year of symptoms
Under the age of 50
Good Hearing and Speech recognition at time of treatment
Less than 4Gy of radiation to the cochlear
Treatment volume less than 1cm3
13Gy or less as a treatment dose

Also many people that have radiation still retain some hearing, which is very useful for direction even if they can’t understand speech. This is not factored into many studies