ANA Discussion Forum
General Category => Hearing Issues => Topic started by: Nancy Drew on April 04, 2007, 06:09:23 pm
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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.
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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
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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
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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
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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
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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
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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?
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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
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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!
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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
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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
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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. . .
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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
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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
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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
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Hi folks,
I noticed a hard time hearing on the phone at work initially. I also had been having bouts of vertigo for years. I went to an ENT thinking I had wax in my ear. He was very good because after my hearing test he knew I had an AN. It was 8mm x 6mm. I was on the verge of loosing medical benefits at work. I researched and visited MD Anderson, John Hopkins, Thomas Jefferson and Washington U. Only one told me to watch and wait, but because of the insurance issue I pursued FSR 25 treatments. The docs all said it was easier to treat a small AN. Day one of radiation began headaches, which I did't have before and are now chronic. Also day one of radiation I get a feeling of movement in my head. Like waves or a worm inching through. 5 months post treatment I lost 90% o fhearing on AN side.These are only 3 of many symptoms. I wish now I had watched and waited.
mema
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Mema, So sorry to hear about the side effects of your treatment. It is a shame you were more or less forced into having to make a decision based on the status of your insurance benefits. Just goes to show how desperate our country is in need of better health care benefits for all. However, I must say that I really appreciate the fact that you shared your story because now it makes me realize that perhaps I should just watch and wait for as long as I can. You are a brave woman, and I wish the best for you. Again, thanks very much for the info. Nancy
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Hii ladies,
I have read with interest your information about your AN. I too have a very small AN (about 4mm). After 5 months of research I have decided to have surgery (next week as a matter of fact), because I have constant sound in my ear and have lost some (but not a lot) of my hearing. Because my tumor is small the doctor can do a middle fossa approach which I understand has the best chance of saving hearing. Any treatment is a risk..... but I am one of those people who does not do well wondering if one day I will wake up and be deaf in my AN ear (which does happen on rare occasions) - I would always wonder if I should have done something sooner. It's not just size of the tumor.... it's also placement. So just keep that in mind as you wait and watch...................... my wish is that your tumors don't grow any larger .... and cause you no more problems.
I'm thankful that we have the 3 different options..... at least we have a choice about something in this situation.
Marg
Mema, I hope you can find a treatment to help with all the problems from the radiation.......you are in my prayers.
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marg, Best wishes on your surgery, and I hope you let us know how it turns out. I think it is important that you do what you feel is right for you, and I realize that everyone has a different story. Seems these ANs affect everyone in a different way for the most part. What might work for one person might not work for the other. As maybe a similar example, I have bipolar disorder, and my doctor said that his bipolar patients (70% of his practice) are as different as night and day for the most part. He has all of us on different combinations of medications. In other words, one size doesn't fit all. So, I think it is this way with the ANs as well. I find that when I meet others with bipolar, I have to be careful about what I say (like, I take the "miracle drug", and you should try it) because while it might work for me it might not work for others. However, when I talk to others with bipolar disorder, we do seem to have a lot of symptoms in common, and it's nice to get support and validation. So, I think it is neat that we have this forum to relate the things that are similar, and at the same time be able to give support to those who have something totally different going on with their AN. Hang in there, and I wish you the best for your upcoming surgery. Nancy
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Hi Nancy,
I had all my pre-op appointments today... and another hearing test. Discovered I did loose a bit more hearing since first diagnosed in Dec... but maybe it was worse because I had louder tinitus today. Many people with AN have better hearing some days than others... just as the tinitus can get better and worse too. You are so right... there is no 'one size fits all' with these AN. We all have to decide what we think will work best for us.
Thanks for the good wishes. I do plan to write and let you all know how my surgery went..... or I will ask my husband to do it for me if I'm not up to "being on line" yet. :)
Marg
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Hi Nancy,
I too have a smaller AN 5mm diagnosed by Dr. R. Jackler at Stanford. My hearing has been flucuating in that ear for a while, the last year. I woke up one morning with virtually no hearing in the rt ear (the AN) ear which is how i got diagnosed. It got better with prednisone and a low salt diet. I have very minor dizziness at times that has not yet effected me. I always have tinnitus, but it flucuates as well, some times several times a day at times it is louder, or has a different tone. My doctor said I could watch and wait, but he feels it is an active tumor based on my symptoms and it will not get better with time. It could stay the same for a while but I'm not sure I personally want to wait, since I now know just how fast one can lose their hearing. I am trying to decide b/w Radiation and surgery via the middle fossa. I guess my point is, is that you never know with these things. I read so many stories of people who had fewer symptoms with much larger tumors! I too want wait for treatment. On one hand maybe something will change and make my decision easier. On the other hand maybe something will change and make my situation worse. Any who, it is a tough situation to be in. It feels like such a gamble, and I have never been any go or interested in gambling. Learn as much as you can about all the options. Best of luck.
Ric
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Ric, It is interesting to hear your story. Of course, I cannot relate to your symptoms totally since I don't experience most of them, and the ones I do have are not so bothersome at this point. It amazes me to hear that sometimes the size of the tumor doesn't really matter in some cases. Is there an explanation as to why your small AN is causing more symptoms than mine? Like, does it have to do with the location of the tumor? Has your AN grown since your initial MRI or have you even had another MRI since diagnosis? I am having my third MRI next week, and I keep thinking if there is no growth (or little) I can just continue to watch and wait. Maybe what I am trying to ask here is, "Did your symptoms get worse all of a sudden without the turmor growing?". I don't want to get a false sense of security with the fact that my tumor is so small. My doctor basically says don't worry about it since it is so small. What exactly is your doctor recommending? Have you gotten a second opinion? So many questions to ask about these tumors, and I often wonder if doctors might recommend treatment prematurely "just to be safe". This is a worry of mine. I don't want to be "scared" into something that might not be necessary. But, there is something I have different than you and that is the hearing in my AN ear is better than in my non-AN ear except when I have those spells of hearing getting worse in the AN ear. So confusing. Good luck with whatever you come up with in your treatment or if you decide to watch and wait. Nancy
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Hi Nancy,