Hearing in AN ear is unpredictable

[Nancy Drew]

Help someone!  I have a small AN (4mm x 5 mm) that was diagnosed by accident in Dec. 2005.  I am in wait and watch mode.  My main problem is that my hearing in the AN ear is very unpredictable.  Sometimes I hear better than other times.  It happens when watching TV, talking on the phone, and with background noise.  It is frustrating, and I am wondering if I had it removed then maybe my hearing would get better.  I have my annual MRI in a couple of weeks, and the doc says if it has grown he wants to do gamma knife.  Surgery freaks me out.  It is so depressing not having good hearing that I can count on.  Another thing is that when I go for my hearing tests (which always seems to happen on a good hearing day) it turns out that the hearing in my AN ear is better than in my other ear.  Anybody out there got any ideas or have had something similar.  I am getting a bit worn out with the hearing problems.  Thanks.  Nancy

[Jim Scott]

Hi, Nancy:

I'm sorry to learn of your hearing problem.  Unfortunately, hearing loss (to varying degrees) is a major symptom of an acoustic neuroma.

Surgery - even surgery that spares the hearing nerve - cannot guarantee hearing improvement, although it has happened.  More often, hearing is diminished, post-op.  With a small AN, such as yours, radiation is often the more viable option.  That is a decision you and your doctor have to make.  However, as with surgery, there is no guarantee that radiating the AN will solve your intermittent hearing loss problem...but it might. 

I wish I could offer you a less ambiguous reply but in all honesty, I cannot.  Still, we can sympathize with your hearing hassle and the dilemma you face.  Please let us know what you ultimately choose to do, Nancy.  Thanks. 

Jim

[Nancy Drew]

Thanks Jim,

It is always nice to have support.  I guess I will have more answers in the next couple of weeks once I get the MRI and talk to my doctor.  I'll update then.  In the meantime would be interested in knowing if anyone else has hearing problems like mine.  Nancy

[sgerrard]

Hi Nancy,

Well, not hearing problems exactly like yours. No two ANs are ever alike. 

I have had, and still have, some fluctuation in hearing level on my AN side. It was more noticeable before treatment, and I expect it to stabilize in another six months - I had CK radiation six months ago. It seems to be a result of pressure in the ear, probably swelling now that I am post radiation, but a similar thing was probably happening before. The AN is not a welcome visitor, and your body can react to it, get irritated, and swell up around it. It may even have to do with pressure that reduces blood flow to the ear itself (the vestibular lab people suggested that in my case). The good news is that if the hearing in that ear is sometimes normal, that means the nerve itself is not permanently damaged, so the prospects for preserving useful hearing after treatment are good.

My own hearing dropped about 50% before treatment, and it has remained there after treatment. With a hearing aid, I am able to get very useful hearing on that side. As I share your dislike of the prospect of surgery, I think the plan to do radiation if it is growing is a good one, and you could have a very good outcome.

I hope it goes well.

Steve

[Nancy Drew]

I received my MRI results two days ago.  The AN grew one mm this past year.  This is the first growth since being diagnosed in 2005.  Also have some slight hearing loss in the ear, and what I had thought might be clumsiness is probably a balance problem related to the AN.  The doctor is suggesting gamma knife.  I told him I can't make that decision right on the spot.  He said he could present my case at his monthly conference, and I am totally satisfied that he offered the opportunity to get a second opinion from doctors from various fields.  Also on the panel is one of the best AN doctors in the Denver area.  There is also a good gamma knife center located here so that seems to be a good thing to know also.  Good thing these ANs grow slowly so I don't have to rush into anything.  I guess I should also research the cyber knife as well.  I was bummed that I had growth this past year.  I thought I would be one of the lucky ones and have no growth, but at least  the AN is small and perhaps I'll have more of a chance of maintaining my current hearing which isn't all that bad at this point.  Thanks for your support everyone.  Nancy

[sgerrard]

One mm is not much growth, in fact it is often said that an MRI has an error of 2mm anyway. I would be tempted to wait six months and have another MRI to see if it is really growing, or if it is just fluctuating a little bit.

Both GK and CK are good radiation choices, with a small nod towards CK for hearing preservation and patient comfort. I would be happy having either one.

Best wishes,

Steve

[Jim Scott]

Nancy:

I agree with Steve. 

The AN is still small enough to give you some time.  I would have another MRI in six months to be certain you really have growth.  If there is (growth) then radiation seems quite possible.  These are decisions you will have to make with your doctor.  As you noted, you have no need to rush into anything at this point...so don't.  Get a plan underway but wait for the next MRI scan before implementing anything.

I'm sure this will work out O.K.  Please keep us informed.

Jim

[GRACE1]

I had Gamma Knife in Dec 2006.  At that time I had 40% hearing loss in the AN-side ear.  They told me, I believe, that there was a 50% chance I would lose the rest of my hearing iin that ear.  15 months after surgery, the hearing loss in that ear had decreased to 80%.  The other 20% is distorted, so I essentially have no hearing in the AN ear.  If that is all I have to deal with, I feel blessed. 

[Nancy Drew]

Such hard decisions to make, and it seems these ANs are so different--not a one size fits all.  I wouldn't have such a problems watching and waiting if I hadn't had any additional hearing loss this past year.  I put my finger in my AN ear all of the time trying to imagine what it would be like to have really poor hearing or no hearing at all in that ear.  Grace, what is it like?  Does your other ear compensate for the loss in the AN ear? 

I have bipolar disorder, and I have always thought that once I got it under control I would probably get something like a brain tumor.  Then I have often thought that if I had the choice of being deaf or blind, I would rather be deaf.  Can't imagine not being able to see the beautiful Rocky Mountains here in CO.  But, if I have to, then I'll just listen to the rush of the mountain steams with my one good ear.  Things in life could be worse, and yes I guess we can find blessings in our lives that will make us grateful for being here on this earth. 

Nancy

[leapyrtwins]

Nancy -

you hit the nail on the head.  All ANs are different and all AN patients are different - what's typical for one isn't always typical for another.  But there is life after ANs.

IMO being SSD (single-sided deaf) isn't as bad as one would imagine.  Lots of people learn to adjust and it becomes a non-issue.  And for those who don't adjust, there are options available.  If you should end up deaf in one ear, look into the possibility of a TransEar or a BAHA implant.  There is lots of information on this forum about both options - all you have to do is search.

Jan

[GRACE1]

Nancy:  SSD is not really that bad compared to other AN problems.  It's more aggravating to others - mostly my family - than it is to me.  I have to turn up the TV too loud for others.  After I printed off some posts on this site from others with SSD, my sweet husband had more understanding of the condition:  he needs to look at me when he speaks, he does not need to speak to me from another room, etc.  There is an audiologist about 30 minutes from me that has had great success with a digital hearing aid in the affected ear.  This is great because there is no surgery involved.  The cost will be about $2700.  I hope to be able to get one this year. 

[Debbi]

Nancy- like others have said, SSD isn't all that bad.  I'm only about a month post op (translab so totally deaf in that ear) and have not found it to be that troublesome.  My hearing in my good ear seems to make up the difference, so I don't need to turn up the volume on tv or stereo.  Of course, I can't tell where sounds are coming from!

Grace - can you provide some additoinal info on the digital hearing aid you referenced?  I would love to read up on it.  Although I have made the adjustment to SSD fine so far, I am not ruling out Baha or some other device in the future.

Debbi

[GRACE1]

Debbi:    According to the audiologist I go to in Milledgeville GA, this is something they have come up with using an ordinary hearing aid.  I'm sorry that I don't remember the details of if.  It's not a sure thing, I believe - sometimes it does not help enoughl.  But it's worth a try for me.  If you want the doctor's address/number, let me know.  And by the way, not having directional hearing is a real bummer.   

[Nancy Drew]

Thanks for your input everyone.  I hope I don't have to deal with SSD, but if I do I will just have to learn how to cope with my "good" ear.  What else can one do!  I have some slight hearing loss in my non AN ear so I will have to deal with that also.  Maybe I can look into hearing aids if it becomes an issue.  Nancy

[leapyrtwins]

I hope I don't have to deal with SSD, but if I do I will just have to learn how to cope with my "good" ear.  What else can one do!

Nancy -

BAHA or TransEar may be options for you.  I have a BAHA and my good ear has no hearing loss whatsoever.  But my doc did tell me if I get to the point in time - hopefully not for the next 25 or 30 years - where the hearing in my good ear starts to go I can just get a stronger BAHA processor.  Currently I have the Divino, but the Intenso is much stronger.  If I recall correctly, he also said that a conventional hearing aide would also work in my "good" ear if it started to go "bad".

That said, people can and do live with SSD every day.  But if you ever get to the point where you want to investigate options, don't hesitate to ask your doctor.

Jan