Author Topic: options for treatments for very small schwannomas  (Read 335 times)

alan321

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options for treatments for very small schwannomas
« on: January 14, 2018, 11:19:32 pm »
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

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Re: options for treatments for very small schwannomas
« Reply #1 on: January 15, 2018, 04:01:16 pm »
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. 

Cityview

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Re: options for treatments for very small schwannomas
« Reply #2 on: January 15, 2018, 08:08:39 pm »
Some people find relief from tinnitus with hearing aids that add noises which distract one from the tinnitus. That is my understanding. Tinnitus comes from the brain and not the ear, so if hearing is lost during surgery, tinnitus can remain or get worse. Perhaps others could chime in and share which devices they use with success.
success of hearing preservation with surgery will depend on many factors such as location and size of tumor, surgical approach and the experience of the surgeons.
Regardless of the size of the tumor it's possible to lose hearing with surgery, radiation or watch and wait. it's also possible to have hearing preservation with any size tumor, whether large or small.
It makes it difficult for patients to make decisions based on hearing. Many doctors advise not making decisions based on hearing, but rather, other factors.

Alan321
Your tumor sounds very different than most. Hopefully others with the same kind will respond.
« Last Edit: January 15, 2018, 08:10:55 pm by Cityview »

alan321

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Re: options for treatments for very small schwannomas
« Reply #3 on: January 16, 2018, 12:05:58 am »
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

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Re: options for treatments for very small schwannomas
« Reply #4 on: January 16, 2018, 03:14:44 pm »
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

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Re: options for treatments for very small schwannomas
« Reply #5 on: January 16, 2018, 09:16:54 pm »
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

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Re: options for treatments for very small schwannomas
« Reply #6 on: February 15, 2018, 06:05:23 pm »
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.
ANA diagnosed Dec 2016
14x4mm schwanoma left ear
75% hearing loss- 12% recognition remaining
Watch and Wait

alan321

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Re: options for treatments for very small schwannomas
« Reply #7 on: February 15, 2018, 07:11:51 pm »
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

 


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