Intracanalicular ANs poll

[notaclone13]

Hi All,  when recently diagnosed with an 8 mm x 3 mm intracanalicular AN I initially thought that the fact that the tumor was confined to the canal was a good thing. Because this meant the tumor was not near the brain stem. However, based on what I have read it now seems that intracanalicular tumors, even if relatively small may cause more symptoms and problems than bigger tumors located elsewhere.  I am interested in knowing how many of us have tumors confined to the IAC.  If your tumor (either treated or untreated) is located in the IAC would you mind posting on this thread?
Thanks,

M.A.

[Citiview]

notaclone13
An intracanalicular tumor is considered at a less advanced stage than if it starts to come out of the canal. People's symptoms vary regardless of size and location of tumor. That's what I've noticed after reading posts all these years. People can have a large tumor and almost no symptoms or a very small one and lots of symptoms. Also, people can sometimes lose hearing with a very small tumor but some people with larger tumors may retain hearing for a long time.

[ANSydney]

I have a 2.4 x 2.5 x 2.9 cm tumor and my hearing is still OK. I get my hearing tested every month and the last test has the PTA at 45 dB and Word Recognition at 94%. I can use a telephone in my AN affected ear, but it's noticeably inferior.

I just called a friend and we had a telephone conversation and I understood every word.

[notaclone13]

An Sydney, just curious, do you have any sound distortion in your AN ear?  In January I mostly had pulsatory tinnitus.  Now I have constant  high pitched tinnitus and sound distortion in the AN ear. Loud sounds make it worse, so I find it helpful to plug the ear with cotton (foam ear plugs don't work very well) or use an earphone and play the free Widex tinnitus app that I downloaded to my phone.  I can't help but believe that the tumor must be growing, although I won't know that for sure until the next MRI in June.  I decided that if it has grown in the 6 month period I would prefer to act rather than wait for it to grow larger and do more damage. I am finding the W&W strategy very difficult to do.  It is like waiting for the other shoe to fall.

[ANSydney]

My AN ear is not as clear as my other ear, but I can carry on a conversion on the telephone. I've got low level tinnitus sometimes, which if I concentrate I can notice. Sometimes, after I stand up, I sometimes get a pulsating softish boom-boom at the same rate as my pulse. It goes within 5 minutes.

I'm the opposite t you. I find W&W easy to do. The good news is that it's been stable over the past three MRIs. If it was growing, more than about 2 mm, it would probably make me anxious.

[JD808]

I have a 1.5cm x 1cm tumor in my right IAC. I have lost 100% of the hearing in that ear, tinnitus has moderated to 1-4 on a scale of 1-10 with 10 being an ungodly racket, balance is wonky especially at night, and I'm now experiencing facial sensation nerve issues on the right side of my face. Consultation with the 2 top surgical teams on the West Coast resulted in identical recommendations for surgical removal. I can't imagine waiting around to see what else this thing impacts next.

[extropy]

I had an extracanalicular VS (3.5 cm large) and I've lost hearing ability (left ear) only in the last month before (retrosigmoid) exeresis. Then after 3 years, I had a new (regrown) VS, on the same ear, but this time it was mainly intracanalicular (volume 2,60 cm^3, treated with gamma-knife). As far as I can say the intracanalicular is much worse (tinnitus, balance, etc.). --serafino (Rome, Italy)

[rupert]

With todays advancements in imaging coupled with the fact that more and more  doctors are willing to use this technology as a standard part of examination and diagnosis , I can see more and more acoustic neuroma's being found at smaller stages.
   Somewhat out of the box here but, its just how I think.  I can see a day where you go to the doctor and your whole body is scanned from head to toe by some type of machine just as a regular part of routine physicals. Many problems will be found earlier and earlier, smaller and smaller.
   There was just a story in our local paper about a 4 year old who accompanied his mother to the doctor to get her blood drawn. For some unknown reason the boy fainted  and so they took him to the ER just as a precaution.  The doctor made a decision to do an MRI and they found a brain tumor.  15-20 years ago I'm guessing this would have never happened.  Who knows where the technology will take us as far as imaging, diagnosis and treatment.

[PurrfectHappiness]

Hi,

I was recently diagnosed 3 mos ago with a 9x5x5mm AN inside left ear canal.

I am experiencing tinnitus, off balanceness, and fatigue. 

I am in “W&W” mode after numerous Dr consultations and tests.

~Kind Regards to all

[Basia]

Hi.  I have a small intracochlear schwannoma. It's inside the labyrinth.  The only symptom is moderate hearing loss and tinnitus.  Diagnosed last Friday by dr. Friedman of UCSD.

[kestes]

Hi I have a 12X5X5 IAC right ear.

symptoms:  high pitch tinnitus (very tolerable), balance issues and fatigue.

Diagnosed Feb 2018 and will have another MRI Aug 16.  No treatment option yet as no need to until we can get a read on what the tumor is actually doing.  I ride bikes, hike, run, dance, etc.  I don't let the tumor stop me.  I also am taking baby aspiring 2 times daily just to see and I also have adopted a keto lifestyle.  No idea if any of these will affect anything but it sure wont hurt! 

I have found music grade ear plugs are fantastic in loud places (went to a local music store and also purchased some at Rite Aid) I have several pairs around now.  Went to Nashville and hit all the places with music and not a single problem.  Invest in the heavy duty ear plugs and I think it will help tremendously! 

[notaclone13]

Hi kestes, welcome to the IAC club.  My 6 month post diagnosis MRI will be in a couple of weeks.  I went to the ENT 6 months ago because I was having occasional, positional pulsatory tinnitus in my right ear. I did not notice any hearing loss, but they found some when they tested.  I had notice occasional bouts of dizziness, and imbalance which I attributed to a different health issue. I had felt off kilter (literally) for about a year but thought it was just due to some work-related stress. At any rate, can you elaborate on what type of music grade ear plugs you bought? I now have almost constant screeching tinnitus in my AN ear, some days worse than others.  I downloaded the free Widex tinnitus app on my iphone and that helps on the bad days.  However, noise seems to aggravate the tinnitus.  I bought some foam ear plugs at Walmart, but they don't stay in place and frankly, a scrunched up cotton ball works better.   So I am curious as to what type of ear plugs you bought that actually work. Thanks

[kestes]

Hi notaclone.  your symptoms, etc. before diagnosis absolutely identical to mine.  I kept feeling off for about 2 years and if I had not had an "explosion" in my ear I still may not know about it. by explosion I mean it was a screeching noise that happened instantly one day, I had to stop and grab my ear and thought what in the world. No pain at all.  then  Immediately after tinnitus and full feeling in ear started.  Thought it was sinus infection, zpak, and rounds of steroids did not help it so went to ENT who after several tests found it. 

The two hearing plugs I use are Hearos from the Music store or you can get on AMazon and Macks brand from the drug store.  They are incredible so far and I have 4 pairs so I can carry them constantly!  My next mri will be august 16 and will just see what is going on at that time.

I have already had the ABR and VNG tests which help determine how your balance is and how your hearing is being affected.  At first the doctors were recommending Middle Fossa to save hearing but with the results of these tests, they think the surgery would only be 50% or less since it is located deep in the IAC. 

Docs have recommended waiting, getting the 6 month mri and if little to no growth then just continuing to wait.  Knowing I still may lose my hearing, but surgery or GK would result in hearing loss most likely anyway, so I am perfectly fine waiting and going on with life and enjoying every second! 

[JD808]

Willsee, I can certainly attest to the damage that small tumors can do, but 2mm is really small. Prior to my surgery on a 1.5cm AN in my right IAC, I had lost all hearing in the ear AND was suffering from some significant balance issues. Your journey to the correct diagnosis looks a lot like mine with missteps along the way. The surgeons ended up having to leave 20% of my tumor behind due to its adhesion to the facial nerve so it is important to monitor the tumor and step in aggressively if your team feels it is appropriate (side note - getting the best team of doctors possible with the most experience is critical). Monitoring isn’t a bad idea at this point.

[DodgeAU]

Hello,

46yo male here working in Melbourne AU, recently diagnosed last month with IAC small 6x4x4 mm AN on my left ear.  Had gradual hearing loss over the last 10 years but Jan 2018 felt 50% hearing loss and tinnitus, hence discovered this little bugger.

Went to Neurologist this week and put me on WW for 6 months then MRI on March 2019.

No balance issues just severe hearing loss and mild tinnitus on AN ear. Have issue on identifying where the sound coming from. My colleague on my left side calling my name but I looked on my right side

Are you guys doing anything else while on wait and watch? I want to preserve my remaining hearing on left if possible. Just in case my AN grow I leaning towards GK treatment.