ANA Discussion Forum
General Category => AN Issues => Topic started by: mel07 on December 21, 2009, 10:56:23 am
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Hi all
I've been reading these forums for a few weeks now, while I try to psych myself into actually seeing an ENT. And I really want to say I'm TOTALLY blown away by the level of support and warmth on offer here.
I have been reluctant to post anything, because I have no diagnosis. However, I do have a couple of the "hallmark" symptoms - gradual hearing loss in my left ear, and tinnitus. The tinnitus developed - or maybe I just became aware of it - about two months ago. The hearing loss is is more long-standing, about four years I think. I wasn't too concerned when I first noticed it; in fact it was helpful in getting to sleep with a teen in the house. But now that I have the tinnitus (and Google), well, I'm worried.
Initially I thought it may be wax build-up. But a round of drops did not fix the problem and I heard no fizzing when I used them. So I don't believe it's a conductive problem. I know that an MRI with contrast is the only way to determine this, so I'm not even sure why I'm posting. i guess I'm looking for validation or reassurance. I tried to talk to my husband about this, and he laughed it off as hypochondria.
Mel
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Mel .....
First of all, welcome to this forum and secondly, you are not a hypochondriac ..... you have valid, concerning symptoms. As you already know, an MRI with contrast is the only positive way to diagnose an AN. I would urge you to make an appointment with an ENT and ask for an MRI with contrast. If nothing else, it will put your mind at ease if it turns out not to be an AN. If it is an AN, you want to know it so you can choose an appropriate action (or inaction by waiting and watching).
Best thoughts and do let us know how you are doing.
Clarice
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Thank you for your immediate response, Clarice. :)
I am about to fly home to Australia (from the US) in two days. I really want this to be a positive trip, because my stepfather has cancer. I haven't been home in five years, and I don't want this to be about me. I guess that's the main reason I have held off. Fear is the other. From what I have read, my symptoms are very specific to AN, but not that sensitive. That is, it COULD be something else.
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Mel~
Hello and welcome...let's hope that you do not have to join this group as an official ANer, but you are MORE than welcome, whether you have an AN or not! We will be support for you though out your process of trying to find out WHAT is wrong with you. Whether you have an AN or not, something is not right or you would not be searching for answers. It may be that your hubby is SCARED TO DEATH too and this is his way of dealing with it - even though that is hurtful to you at this time. I would encourage you to schedule that appointment and get this show on the road so that you can get some answers & feel better "knowing" what is really wrong. Feel free to use us as a sounding board to ask any question! In the meantime, TRY to enjoy your holidays, these are usually VERY slow growing and not life threatening any way - if it is there, it is there and there is not a lot you can do about it in the short term (a week). If it is an AN, it more than likely has been there for a while already & you just didn't know it! PEACE to you as you struggle with this...
K ;D
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Kaybo, hi
Of course you are right. Knowing is the best thing right now, but unfortunately it's also not an option. No time to get an MRI before I leave. (I could, however, get in done in OZ. Then it would be free. - I'll save my vitriol for the US medical system for a later post.)
A few things I've noticed about myself from researching this condition are not pleasant. I am more concerned with facial paralysis, for example, than hearing loss. Weird.
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I think 99.9% of the people on here would say they were more concerned with facial paralysis than hearing loss...don't feel bad about that - that is human nature! And really, that is probably how it should be...you have another ear (spoken by a person that has been SSD - single sided deafness - for 14 years) & there are many options out there to help with that, BUT your face is an expression of your soul and everyone sees it everyday! Does life go on if you do have facial issues? YES!!!! But it is still not wrong to be more concerned about the face!
Please enjoy your trip and try not to worry too much about this - why waste a lot of unnecessary energy over something that you don't know about for sure?
K ;D
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Mel,
Welcome to our neck of the internet woods. I think regardless of whether your husband thinks it's hypochondria or whoever else, you should get an MRI with contrast. Tinnitus and hearing problems can be attributed to MANY things other than an AN, and I hope that in your case it is something else treatable. But, do know that we'll all be here to help answer questions about treatment, symptoms, etc... if it turns out to be an AN or not.
You shouldn't just pass it off as something else, you should get the MRI to be sure. Like you, had had tinnitus and sudden loss of hearing and I chalked it up to wax or something. Looking back, there were so many "hallmark signs" over the years but each were attributed to something else. For example, that last year before diagnosis, I had 4 sinus infections... chalked that up to it just being a crazy year of weather making my lifelong sinus problems act up (ironically, since surgery, I've had very minimal sinus issues and not one sinus infection). My wife complained of my not hearing her as well and I sluffed it off. Little did I know but at the time of diagnosis I had a 3cm AN growing and putting pressure on my brainstem. After awhile, many things started adding up..
I say that not to scare you, but to let you know that you shouldn't just sluff it off and chalk this up to something else. You have a way to know for sure if it's an AN.. Do it.
Welcome to the forum..
Regards,
Brian
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Brian, yep. Lots of "red flags". I don't drive, and have found myself increasingly saying "What?" when in the car. I am a leftie, and have recently swapped ears when on the phone. This morning, my husband had the clothes dryer going (yes, he's one of those hubbies, bless him) and i realised I could only here on the right.
I have some serious vision problems also. My one consolation over the years was my ears were OK. Drat.
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wish you would help me
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wish you would help me
Help you with what, Mel?
Regards,
Brian
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Hi, Mel ~
Welcome - and thanks for taking the time to post. No need to be reticent about posting because you don't have a diagnosis, we're not that exclusive!
You're right about your symptoms possibly being caused by something other than an acoustic neuroma. However, as you know, only an MRI with contrast can determine that with any certainty. I'm sorry about your loss of your stepfather to cancer and I admire your determination not to make your visit home 'all about you'. However, upon your return to the U.S., I would hope you'll surmount your fears - which are normal and natural - and call the ENT physician to ask for an MRI referral. If the MRI scan shows no AN present, perhaps the cause for your symptoms will be found. In any case, I think you realize that doing nothing is not a realistic option. Fortunately both surgery and radiation techniques to treat an acoustic neuroma have notably improved over the years and the odds of you coming through either one successfully are quite good.
I trust that you know (from your research) that 99.9% of acoustic neuromas are benign and eminently treatable. I hope that you also know that the folks here - including me - stand ready to advise, commiserate and support you in whatever you chose to do concerning a possible AN. Meanwhile, we wish you a happy holiday and a safe trip to and from Australia, where the temperatures are well into the 80's these days :)
Jim
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Hi Jim
Yes, it will be very warm in Australia right now! I posted a reply, but it appears not to have taken. :P
I hope that you don't feel I am the shallow person I suspect myself of being.
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I also agree you should definitely get an MRI if it is an AN they are mostly slow growing but the sooner you find out the quicker you can research it and make a decision but I am hoping that it is nothing please keep us posted.
Regards,
Pat
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Mel,
I understand the thoughts you may be having, since you're considering that you may have an AN. Statistics would say that you most likely have some other condition causing your symptoms, AN is fairly rare. I'll also point out that hearing loss on the AN side due to AN is usually sudden, rather than gradual. I hope you can get in to see an ENT soon to have it checked out.
If you end up having AN, the forum has some folks from Australia (LAZ for one), who you can contact for information about treatment there.
Regards,
Rob
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I'll also point out that hearing loss on the AN side due to AN is usually sudden, rather than gradual.
Hmmm. I think quite a few of us would say that our hearing loss was gradual rather than sudden. Gradual hearing loss -- over a very long time -- was my only symptom and I went to the otolaryngologist expecting him to tell me I needed a hearing aid.
Catherine (JerseyGirl 2)
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I would definitely go with GRADUAL also...
K ;D
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Just to muddy the waters a bit, my wife said she noticed a gradual decline in my hearing over the years, but I never noticed it. I noticed the sudden loss..
I would suspect that most people would not notice a gradual loss (although others might) but would notice a sudden loss.
Brian
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I'm not sure if my hearing loss was sudden or gradual.
One day I was just sitting in my office and I realized that I couldn't hear normally out of my left ear. It just hit me - I don't know why. A few minutes later the phone rang and when I held it to my left ear like I always did post op, I could recognize the words the caller was saying, but everything was kind of muffled. I also noticed that my left ear felt full - like I was in an airplane.
I figured I was getting a cold or a sinus infection and that eventually my ear would "pop" and I'd be able to hear normally again. As we all know now, that didn't happen ::)
Jan
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Mel,
Welcome to the Forum! I hope you do not have to join this exclusive club... Either way, as others have said, we are here for you.
I noticed gradual hearing loss for over 12 years, starting out with not hearing the preschool children - i was teaching 3 year olds at the time.
Then i had 2 hearing tests, and the docs said i was getting old - at 40!
So i went along until 2008, when my sister had some hearing loss, went to an ENT who promptly ordered an MRI.
WELL - that was enough for me, i found a different doctor and asked for my own MRI.
[I am sure my husband thought i was imagining things because my sister had a diagnosis.]
Nobody wants an AN, but i was quite relieved to know i wasn't going crazy!
You have some other family concerns right now.
Travel safely and keep us posted on your progress when you are able.
Sincerely,
Sue
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Isn't it weird that although the diagnosis is an AN there is still a sense of relief that you have something with a name. It was like a "told you there was something wrong"with me" to all the people who thought you were just being a hypochondriac.
My hearing loss was gradual and docs thought it was a blocked Eustachian tube....and I was quite willing to believe them because they were doctors. On the 4th visit I kicked up a fuss and they thought it was Meniere's disease so sent me for tests - you could also have this Mel?? I hope you get yourself checked and don't leave it too long, although they are slow growing the size has a tendency to sneak up on you.
Anyway welcome back downunder, hope you enjoy Aussie (all the flys- cmon I know you miss them)
Kiwi
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Isn't it weird that although the diagnosis is an AN there is still a sense of relief that you have something with a name. It was like a "told you there was something wrong"with me" to all the people who thought you were just being a hypochondriac. Kiwi
I have to agree with Kiwi - i really wanted to say 'i told you so,' too.
I had an aunt who relatives always claimed was a hypochondriac. She passed away when i was a teenager, after having a kidney removed and then cancer.
Maybe we were not 'listening' to her like we should have. But then again, she would not seek a second opinion, and i am not sure but i think her primary care physician was somewhat of a 'quack.'
I realize how lucky i am that my SISTER'S doctor recognized the symptoms for her, which eventually led to my diagnosis.
But, even after a hearing test, my results were 'inconclusive' on the first round. So i had to ASK for the MRI.
Bet the ENT didn't expect to see an AN there either! Well, i didn't wait for the call, just went and got the report from the radiology dept. - read my own results.
My sister was very concerned and i called her right away. But i told her i was indeed relieved to know what i was dealing with.
This is just me - i like all the information i can gather, so i can try to make an intellectual decision based on that.
You will get through this, Mel. And we are here for you.
Sincerely,
Sue
PS If you can - please bring back some sunshine and warmer temps from down under - it is cold here in Virginia!
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It seems like there is no "standard" on hearing loss with an AN. I am guessing the type of hearing loss has much to do with the location of one's tumor. My balance issues had been present for almost a year before I suddenly had the stuffed up ear hearing loss in one ear only and no tinnitus. Fortunately I had excellent physicians who took my complaints seriously and ordered the appropriate tests rather quickly.
Clarice
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My hearing loss was also very gradual. I think my wife had been telling me I was going deaf for about 5 years before the tinnitus started. Even the tinnitus didn't immediately send me to the ENT. I had some vertigo (which I also ignored), then I started to get really strange "vibration" type sounds in my right ear when exposed to loud noise (specifically, the organ at church). That finally got me to get checked out. My AN was fairly small, and has since been removed.
I can't add much more than what's been said already, Mel. I will say that you surely have time to make appointments and such when things settle down some. If it is an AN, they grow very slowly, and waiting a month or so will not have a huge impact on your outcome. I don't know much about the other causes of hearing loss and tinnitus so can't speak on those subjects.
Just know that if you do end up diagnosed with an AN, you couldn't ask for a better bunch of people to talk to than what you will find here.
Ernie
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HI Mel :) I'm new here but I just wanted to encourage you to not put off going to an ENT with your concerns and if you feel it isn't addressed get a second opinion. My experience went on for months before I got a second opinion from an ENT that I know personally and right away he suspected AN and sent for MRI. (The first ENT told me I was just going deaf and needed a hearing aid!) I was also having bad dental work fixed and kept thinking that it was my teeth causing problems! There's a good chance that your problems could be something different but even if it is, you should find out what. Prayers to you....sincerely,michelle d.
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Hi all
Well, I'm back from my holiday, and what an intense three weeks it was. Absolutely exhausted. I STILL haven't gone to the ENT, but am going to make an appointment this week hopefully, once I'm over the jet lag and my brain fog lifts. I'm reaching the point where the endless speculation is driving me bonkers.
Anyway, during my vacation there were periods of time where I was just so busy and engaged that I actually forgot all about the tinnitus. Now that I'm home, however, and have all this time on my hands, I've become hyper-aware of it again.
I know it's counterproductive for me to be coming here and asking questions without a diagnosis, but I just can't help myself. :-\ I guess I'm just looking for anything to grasp onto that might persuade me it's not an AN.
SO .... I was wanting to ask about the tone/sound etc of your tinnitus, and whether there's anything such thing as "typical" AN tinnitus. Also, the nature of your hearing loss. Is it high frequency? An overall muffling??
Apologies for being such a pain in the butt. I know what I need to do, and I will do it. Soon.
Mel
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Hi Mel,
First let me say that increased use of MRI's has been, and will be beneficial to AN patients in the future because they are finding them when they are smaller. This can hopefully give a person more options for treatment. That said, get thee to the Doc.
On the tinnitus, mine started out like bees buzzing. It would only be when I turned my head a certain way when trying to sleep. Actually thought the house was infested! Then it just went away and my ear felt full all the time. I thought it was wax. Then it came back but, sounded more like putting your ear to a sea shell. It now sounds like the sea shell but injects a high pitched squeal some times. This is constant. I know it's hard but the best way to deal with it I found is to not think about it. Easier said than done, but I have become proficient at it enough to get by.
So I guess tinnitus can be in any form or intensity and can change with the wind. I wish you well.
Bryan
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My hearing, prior to my diagnosis, was muffled and my ear felt full - kind of like when you're on an airplane and you're waiting for your ear to "pop" - only mine never did.
After my diagnostic MRI, I knew why ;) ;D
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Hi Mel,
First let me say that increased use of MRI's has been, and will be beneficial to AN patients in the future because they are finding them when they are smaller. This can hopefully give a person more options for treatment. That said, get thee to the Doc.
Bryan
Hi Mel and welcome back!
We are all here to support you, so don't worry about asking all your questions.
Some conditions are not exactly the same, but related and some with similar treatments.
I will agree with Bryan - time to get to the doc and find out what's really going on.
If not for my sister's ENT, i would STILL be wondering! [never heard of an AN before June 2008..]
My tinnitus is random and not often. It is a very high pitch and when it does come, i just want it to STOP.
I believe there is a website where you can go and listen to the actual sounds others hear
(fellow Forumites -someone help me here, i forget the details...!)
I remember that you have a sick family member and traveled a long way to visit (is that correct?)
I hope you had a good visit - time can be so precious and i know you traveled quite a distance to see family.
My thoughts and prayers are with you.
Please send updates when you can.
Sincerely,
Sue
PS I am now in W & W, so in essence have selected my 'treatment' at least for now.
After a well-meaning resident tried to talk me into surgery last month, i e-mailed my ENT and told him to PLEASE have his residents read on the AN FORUM. I told him i come to the FORUM for hope.
Take care.
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Hi Mel,
I don't think there is a "typical" AN tinnitus. I had tinnitus from an ear infection in 1985 or so, and just lived with it throughout the years.
Not until my hearing became "muffled" did I seek MD help.
Hope you "hear" an answer soon on all this. I agree it would drive me bonkers wondering...
Best wishes,
Maureen
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Hi Mel,
Welcome to the forum! I have been reading your posts. Please schedule your appt. with an ENT soon! You don't want to be speculating and worrrying. Whether or not you have an "an" we are here to support you. I found this group early on and they have seen me thru. I was diagnosed in July 2009 with an "an" and just had surgery in December. This forum has been invaluable to me. The people, the support is incredible. I could not have made it through this journey without them. Do what you need to do, and find out just what it is. We are here for you.
You will be in my thoughts and prayers,
Gingerbread 6
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Well I saw an ENT yesterday. He immediately suspected an AN - or MS - and sent me for MRI today.
Just got the results. Doc won't be back till MOnday to read them, but I think it's good.
IMPRESSION:
1 Findings of a few isolated foci of signal alternation within the white matter. THese are nonspecific findings and may be associated with small vessel disease/gliosis. these findings are not specific of a demyelelinsating process.
2 No specific findings of recent infarction, hemmorrage of contrast enhanced lesion.
3 No obvious abnormatlities identitfied along the 7th r 8th nerve complexes
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So i guess i still may have a brain tumour, just not a cool one. :P
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Hi Mel!
I am so glad to hear you have had your MRI!
Sorry i can't interpret the results - mine was fairly definitive and i read the results long before i talk to the doc.
Please keep us posted on the interpretation - AN or not, we are glad you are here! ;D
Sincerely,
Sue
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Hi, Mel ~
Of course I'm not a doctor and cannot offer a definitive analysis of your MRI report but my 'uneducated' guess is that you do not have an acoustic neuroma . This is good. :)
Jim
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Mel,
Hmmmm, who knows what you have? But nothing toooooo alarming, I guess.
Let us know what the doc says on monday.
Maureen
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Thank you all for bearing with me. Of course i will know nothing till monday, and even then i think i will find a neuro, rather than go back to that ENT. I don't want to jump the gun, but I really have a lot of neurological issues (the hearing loss was actually the least of them until the tinnitus), and I think a neuro-opthalmologist will be my next stop. I have many, many scotomas in my vision and visual migraines and the hearing loss was the straw etc. I will let you guys know, of course. Blesssings. x
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My amateur read would be that #1 is saying you don't have MS; #2 is saying you haven't had a stroke and don't have a tumor; and #3 is saying you don't have an AN.
I have an occasional scintillating scotoma (love that term), fortunately not followed by any headache. Frequent ones would indicate an neuro-opthalmologist is in order, so that sounds like a good plan. I hope you get to the bottom of it!
Steve
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Hi again and thanks Steve. You put my mind at rest over the weekend.
Apparently I was meant to have an appointment with the ENT yesterday, but I missed it ... anyway, I rang them and asked the receptionist for a reading of the MRI report over the phone. She told it was "pretty unremarkable" and didn't suggest I come in. So I guess that's a good thing. Will keep you posted. Thank you again for all your input and support.
x
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Denial is no longer just a river in Egypt! I had hoped too that it was just ear wax in my left ear that prevented me from hearing well. But a 3cm AN caught me off guard. It is a better idea to get the MRI done so that you can move on in life whether a AN is present or not.
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Mel -
glad to hear you don't have an AN.
Jan
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Of course I'm relieved at this news - but there's still the matter of the sensori-neural hearing loss and tinnitus. ???
PLUS, worrier that I am, I'm still not 100% convinced they didn't miss something. This MRI was done in a small town, not a large hospital. I had contrast, but I'm wondering whether it's possible to overlook if it it's really small, say like 2mm. I'm not sure where I read this, but there was a poster who said he had FOUR MRIs before they found his AN ....
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Mel -
ANs are notorious for being misdiagnosed, but usually by the time someone has a MRI - often one of the last steps - it's evident.
IMO even if you have a very small AN, a MRI - no matter where it's done - should detect it.
Lots of people have tinnitus without any reason given for it and sensori-neural hearing loss can be attributed to many things other than ANs.
I hope you get some answers soon,
Jan
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Thank you all so much! I will come back and let you know what it is - at the moment, it's "idiopathic", which of course is a fancy way of saying "I dunno".
x