Hearing that comes and goes

[Nancy Drew]

I was diagnosed with AN 4mm x 5mm in left ear Dec. 2005.  My six month MRI showed no growth.  I have my next MRI in May.  All of my hearing tests so far have been within normal limits with the AN ear actually being better than the other ear.  However, I notice that from time to time the hearing in my AN ear seems to be worse and then get better.  I can tell this by having to turn up the volumn on the TV when usually I am able to have it lower.  I also notice that I have to ask for things to be repeated sometimes and not others.  Then there is the switching of the ear when on the phone.  Seems llike it can last a couple of hours to a couple of days.  It's as if my ear gets plugged.  Does anyone out there have something similar?  Sometimes I feel like I am paranoid about the whole thing.  I am in watch mode for now so feel lucky in that respect, but I do worry about the next MRI results.  I don't seem to have any other problems except lately I feel like my balance is not so good.  I haven't fallen, but I don't feel steady on my feet.  My doctor says if there is no growth with this MRI then I should just forget the AN is there.  Is that good advice?  Doesn't feel right to me.  Can't these things suddenly grow without much warning?  Thanks for any info.

[krbonner]

Hi, and I'm sorry you have to join our club.  But welcome.  I don't have any personal experience with hearing that come and goes, sorry.  Mine disappeared overnight and never came back.

You AN is small.  Many people with small ANs are on watch-and-wait status and are very happy with that.  Mine was originally 1.8cm, and I was on watch-and-wait for a year.  Mine grew very rapidly, unfortunately, so I moved forward with surgery after a year (though my symptoms didn't change during that time).  Generally speaking, ANs are very slow-growing, and you do have time to research all the options and decide what's best for *you* in your particular circumstances.  I guess all I'm trying to say is that the advice to watch-and-wait may not be off-base.

The problem with AN treatments is that they're not curative - they won't (generally) fix hearing, tinnitus, etc.  The goal is to keep things from getting worse - you have to decide when the risks of treatment are outweighed by the risks of waiting.  Surgery has a high risk of damaging residual hearing, radiosurgery less so.  (I'm not up on all the latest stats for the various options, forgive me.)  The critical factor is finding a doctor who has tons of AN experience (hundreds of cases a year) and can guide you without being biased towards one kind of treatment over another.  They're tough to find, but they are out there.

Good luck to you.  I found that once I had done all the research, talked to all the doctors, and made my own decision about treatment (both originally and when I decided to move forward) I was very comfortable with my decisions.  I hope you can get to the same point. 

Katie

[Nancy Drew]

Thanks so much for the info.  I will definitely be taking your advice to research the options should I have to make a decision to get treatment.  I am happy now to watch and wait.  Hopefully the news will be good when I have my next MRI in May.  Although the hearing thing is annoying, I know it could be worse.  The balance situation could be because I am dealing with a knee injury that might be affecting my balance.  I'll ask the ortho on Monday.  Sure is easy to become paranoid about everything associated with an AN.  Even if the darn thing never grows, I will always know that it is in there which kind of bugs me.  Sorry that you lost your hearing so suddenly, and I hope things are going well for you since your surgery.  Thanks for your concern in posting a message.  Every little bit of info helps.  Nancy

[targa72e]

HI Nancy,

I also have a small AN. I am also watch and wait. Sudden hearing loss was my first symptom. My hearing got better over the first year of watching (holding at 50DB loss, 90%srt). About a month ago I had a sudden change in hearing and took a course of steroids and my hearing returned. My MRI’s also show no growth but I have had a steady progression of symptoms. About 9 months after initial diagnosis I started feeling a little weird balance wise. It was a similar feeling to having had a couple of beers, nothing bad like the world spinning or falling over just a little off. I had some testing done a few months later and found I had lost 40% of my balance function on the AN side. At about 1 year I developed a numb spot on the tip of my tongue (that never got better). Then a month ago (june 1st will be two years) I have more hearing problems. I had keep trying to forget about the AN as most of symptoms are pretty minor but it keeps rearing its ugly head and making itself known. I have read that while the average growth of AN’s is in the 1-2mm a year, small AN’s in the IAC average more like .25mm per year. Unfortunately there is not a lot of room in the IAC for these things to grow and even a small disruption of blood supply can cause problems. I will continue to wait and watch and get regular MRI’s until I decide to have treatment.

john

[Jwh]

Hi,

I've been experiencing that for the past couple of months..  I had a regrowth discovered after some hearing fluctuations.  I also wonder if it's associated with growth?  Any input?

Jen

[Nancy Drew]

Thanks John for the info concerning your situation.I guess this just shows that every AN can be different but also similar for some.I am thinking about getting a second opinion if the MRI shows growth or if the hearing and balance problems continue.I think small ANs have a tendency to be ignored or downplayed perhaps.What an interesting and frustrating process this is.Keep up with the feedback anybody out there.Nancy

[carolk]

I'm also a "watcher and waiter" with a small (4x4x6mm) AN in my right ear that was diagnosed in december 2003 as an "incidental" finding when I had an MRI for another reason.  Until recently I've had NO symptoms and yearly MRIs have shown little or no growth (it was about 4 mm when first diagnosed).   About two months ago, after returning from a trip to Europe, iI noticed a wierd sensation in my right ear -- like it  never "unpopped" after our plane landed.  After several weeks of this "muffled" sensation, I went to my ENT, who had me go through a complete audiogram, which found no changes in my hearing (my AN ear is my "good" ear!).   I'd just had an audiogram two months prior at the same time as my annual MRI, which showed "no significant change".  The doctor told me the muffled sensation--"Couldn't" be the AN, since my hearing was unimpaired and gave me nose spray.  That didn't help.  Two months later my right ear still feels "muffled"--sometimes more than others--but it's not painful and my hearing seems okay, so I've tried to ignore it.   My ENT said, "I have nothing more to offer you."  So I am going in to another ENT for a second opinion.  I'm hoping it's something OTHER than the AN. . .
  The time I'm most bothered is when I'm teaching--it's hard for me to hear how loudly I'm speaking--it's like my inner "volume control" on the right side is impaired. . .Does this sound similar to what you're experiencing?

[Nancy Drew]

Hey CarolK,  Our ANs seem pretty similar in a lot of ways (small, not growing, hearing in AN ear better, and basically no symptoms).  However, the muffled sensation seems strange.  Have you seen a specialist who treats ANs?  Sometimes the generic ENT doesn't know the whole story about these ANs, perhaps.  Has a build up of ear wax been ruled out?  My husband had a muffled sensation that came on suddenly which he thought was from swimming while on a business trip that worsened on the plane trip home.  When he had it checked out, it was discovered that he had a ton of wax build up.  Once he got that stuff out, he was amazed at how much better his hearing was.  So, just an idea just in case your ENT didn't check for that.  I have my second MRI since diagnosis next month.  I am crossing my fingers that the AN hasn't grown.  Still, I am worried about the hearing problem since I am sure I will have my next hearing test on a "good" hearing day.  Wish I could just run to the doc's office when the hearing is acting up and say, "hey, check it now"!  Crazy stuff all of this and something I don't look forward to dealing with for the rest of my life--always wondering what is going to happen.  Best wishes to you and let us know what happens.  Nancy

[carolk]

Hi Nancy,
   I'm actually about to see an ENT that does NOT specialize in AN about my muffled sensation.  I've seen the University based ENT surgeon/AN specialist about it and she had me have another audiogram (even though my previous one with MRI had been two months prior)  it showed "no change"--which is good, so she said it is NOT the AN that is causing my problem and gave me nose spray, which didn't help.  When I contacted her two weeks later because I'm still muffled she said "I have nothing more to offer you, time should help."  It's been two months, so I'm going to a basic ENT--maybe it IS ear wax and he can relieve it!  hard to know what's the AN and what's not, but she said it's not. . . Our ANs do sound similar.  You may be interested in an article I wrote about my experience in getting diagnosed--it's posted on my web site under Carol's Articles (www.healingmoves.com)  click on the NY Times piece, "Stunning News of A Tumor Serendipitously Discovered."  I'd be interested in how you learned of yours!

[Windsong]

Carol,

Thank you for your post in this thread. I am still busy reading some of the links in it.

I needed to read some of this tonight ( reminders are good when one gets caught up in too many appoitments/med type scenarios)so I very much appreciate the article in the NY Times along with the others.

Funny, last fall during a healing session I, too, began visualizing my An dissolving (for me it was going from a hard edged capsule to a jelly type thing)....

There is much to note in your articles about wellness, breathing, exercise and so on.... I am still reading.

Again, many thanks,

Windsong

[Nancy Drew]

Carol,  Back in Nov. 2005 I started having vertigo (dizziness), balance problems, and blurred vision.  I thought it might be an inner ear problem since I had had that once before.  The ENT thought it might be an inner ear infection and gave me antibiotics.  He also did a hearing test that was within normal limits.  When the symptoms didn't go away, he did a balance test (normal), and then sent me for a MRI to rule out anything else.  That is when they found the AN in my left ear (small one, 4 x 5 mm.)  He sent me to a specialist.  He did another hearing test and like you, said the hearing in the AN ear was better than the non-AN ear (but, still overall hearing was within normal limits for my age, 46 at the time).  He said the symptoms I was having were not the initial first symptoms of an AN.  He thought they might be from migraine headaches without the actual headache.  Had heard of this kind of headache, and I figured it could be possible since I had had a history of miigraine headaches for eight years that had subsided once I had a complete hysterectomy.  I was worried about the possibility of the headaches coming back.  The symptoms continued for several months, happening only in the morning and lasting two to four hours.  No matter what I did the symptoms wouldn't go away.  I just had to wait it out.  I should mention that I have bipolar disorder that had been under control until a year before the AN was diagnosed.  My psychiatrist had gradually increased my medication (Lamictal) during that time, and one day he decided to have my level checked to see if it could be causing the symptoms.  Sure enough the level was in the toxic range, and it made sense that the symptoms would be happening in the morning since that is when I was taking my medication.  As soon as I went down on the dose the sysmptoms went away.  What a relief because it was something that could be controlled.  In the meantime the specialitst recommended that I have a MRI at six months (no growth on that one) and anually thereafter.  He recommended that at the first sign of growth or sudden hearing loss in the AN ear, I should consider the gamma knife procedure.  Of course, if it comes to that I will get a second opinion and research other options.  So, that is how I was diagnosed.  The past couple of months I have noticed that the hearing in the AN ear gets worse from time to time, and some balance issues have been happening.  My psychiatrist is going to have another Lamictal level taken this week to determine if it could be causing the balance issue, and then I am also wondering if a knee injury I am being treated for could be causing the balance problems.  I have my next MRI in three weeks so I am a bit anxious to see what is happening with the AN.  I think I get paranoid when little things come up sometime, and like you said, it is hard to know what is and what isn't caused by the AN.  I hope your ear turns out to have wax build up because that is simple to fix.  Please let us know what happens.  Also, thanks for directing me to your web site.  The article was helpful, and I think it is important to get more info out there about ANs.  Thanks everyone for sharing your stories.  Nancy

[carolk]

It is a BIG challenge to try and discern what symptoms are related to the AN and which ones aren't. I saw a "plain old" ENT yesterday and he was great.  He said my muffled sensation is "eustachean tube dysfunction"--something he treats people for often (about 3 or 4 patients a week come in with this complaint).  he says it's NOT related to the AN (which my university based specialist had also said, but she didn't tell me what it was. . .).  and he suggested using Afrin or another nasal decongestant before any airline travel.  Cause is unknown, possibly a virus that may resolve.  Some people are helped by a course of steriods, which I may try. . .but I'll probably just wait and see if it resolves.  He took time with me, answered my questions and didn't treat me like an annoyance (which is how I feel around my university-based specialist, who is a surgeon).  He said he'd be glad to keep seeing me--have my MRIs at a local facility, not the University and he would do audiograms.   My next MRI is not till January, so I'll think about this.  While I like him a LOT more and he seemed competent, I'm not sure I'm ready to give up the academic medical center for MRIs and follow-up. . .

[Nancy Drew]

What a relief that your ear problem is not related to the AN.  Hope you find some relief soon.  Sounds like you found a gem in your "plain old ENT".  The MRIs are read by a radiologist I assume so if there is a change in size seems your ENT could just send you back to the university doc.  I get my MRIs done at a non-university facility so I'm not really aware what the difference would be between the two.  You know doctors are interesting aren't they?  Maybe we don't give some enough credit.  My psychiatrist usually pegs my medical problems before my PCP.  I think it is important to have a good relationship with your health care provider.  I also think you just have to go with your gut and do what you feel is right.  I read on your web site that your husband is a doctor.  Does he give you any advice about doctors and medical care?  Hang in there and best wishes on your journey.  Nancy 

[carolk]

thanks, nancy, for your good wishes.  sounds like we're in similar boats--we've learned we have a "little bitty brain tumor" almost by accident.  if we hadn't had an MRI, we'd probably not known about these things.   for now, I mostly just ignore it.  But I do have a headset telephone, where I only use my right ear (with the AN) to listen.   I understand that being unable to hear on the telephone is often a sign of AN growth, so this way I'll have some way of knowing whether my hearing is diminishing. . .  Yes, my physician husband is a great help.  however his specialty is cardiology, so he doesn't know specifics about ANs.    But living in a medical family, and being a journalist covering health, makes me very aware that there are NO guarantees when it comes to medical procedures and that even good therapies can have bad side effects.  So it all becomes a question of balancing risk and benefit--which is why I'm in NO RUSH to treat this AN, especially without symptoms.  All best to you!  --carol

[Nancy Drew]

Carol, I think I have mostly ignored the AN since my last MRI a year ago.  When I am having a "bad" hearing day, I usually wonder if it's the AN.  Or, I just think about the fact that my mother and grandmother have hearing aids and maybe this is a genetic thing (of course they got their hearing aids in their 70s, and I'm not quite there yet!)  I think I am just anxious right now because the MRI is coming up.  After the intitial MRI in Dec. 2005, I had the next one five months later.  It's measurement was 2mm less than the first reading, and I was psyched that the AN was shrinking until the doc told me MRIs are often not exact in their measurements.  Depends on who is doing the MRI, what the angle is or how it is being read by the doctor.  He said in all probability the AN had not shrunk, but it had not grown either.  I think if this MRI shows no growth for the past year, I will feel more confident that it might NOT actually grow (just sit there and hang out with the brain matter).  However, I do know that these things can decide to grow rapidly, but I guess one just can't worry about that because these things can't be controlled.  Even though the hearing gets worse at times, I can live with it although it is frustrating at times.  As for the balance issues, I am at least happy that I haven't had any falls.  I mostly just "tip" to the side (like I might be drunk), and I know it is smarter if I walk though the stream rather than trying to walk on the fallen tree or the skinny board that someone has placed to get to the other side!!!  I hike a lot here in Colorado so I just need to be more aware when climbing rocks or getting close to steep edges of the canyons.  I am supposed to get some fluid shots in my arthritic knee soon so maybe that will be helpful with the balance issue (maybe the balance issue isn't even a symptom of the AN anyway).  I guess it's better to know "it" is in there, but I often just wish I didn't know because I will always wonder if it is just a tiny thing that has no meaning inside my head (kind of like that mole on Cindy Crawford's face--although it is her famous trademark!!!).  Best wishes to all who read our stories.  Nancy