ANA Discussion Forum
General Category => Inquiries => Topic started by: RAS on October 30, 2007, 11:00:48 am
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This is a fabulous discussion board and an amazing place for AN information. Thanks for letting me post.
This may seem like a strange place to ask this question, but I can't seem to get a good answer from my ENT and my MRI (with contrast ) is scheduled for December (I will be out of the country for the next month and opted to get it done upon my return).
I have read many, many posts but as many of you have watched this board longer than I have, is there another reasonable diagnosis for partial hearing loss in one ear, tinnitus, and that "full" feeling all in the same ear? I started out at the ENT to diagnose the full feeling and tinnitus. I left with an audiogram showing partial hearing loss, a diagnosis of a Eustachian tube dysfunction, and no explanation for the rest other than the chance for AN. A week later, a course of oral and nasal steroids, an appointment for an MRI, and no change other than a case of PANIC.
I'm keeping my fingers crossed for some other diagnosis and have read several posts here that resulted in a negative MRI findings. What are the chances that this is NOT an AN and something else? I'm not looking for a definitive answer -- just something to distract my ideas that I will for sure be diagnosed.
Thank you!!
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Hello RAS,
Another possibility for your symptoms is fluid buildup in the ear. Usually for AN the hearing loss would be described as sudden. AN is relatively rare. So the chances of you being a tumor carrying member of our forum are quite slim. Try not to dwell on it until you get the MRI with contrast results. AN is slow growing (average growth is often quoted as 2 mm a year), and benign (non-cancerous). So if you were to be diagnosed with AN, unless it was very large, it would not need to be treated on an emergency basis. People on this forum report treatment dates months, or years, or never, after diagnosis. AN, while alarming, is not the end of the world.
My advice would be to go find a margarita and try to relax until you find out for sure with the MRI.
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Relax.... most people who come on here waiting for a MRI (and classic sym).. end up they dont have a AN. it is kinda rare ... but if you do, you have come to the right place for help!
and if you dont, you can hang ... we dont bite.... * well -- maybe Phyl * :o
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Thanks so much for your responses. I feel awkwardly selfish, asking what it might NOT be in an environment where folks obviously are dealing with the actual effects. Interestingly, the margarita is a great idea -- alcohol actually decreases the high frequency pitch in my ear.
Although my symptoms seem consistent with AN, I realize it could be quite a few things -- but the ENT went straight for the AN possibility while leaving everything else aside. I realize AN is rare, but then why not: "hey, let's treat you for X, Y, and/or Z and then let's go with the MRI"? I'm usually a glass is half-full person, and do not want to pretend that I have something that you all are for sure dealing with. I'm never sick, in good health, and middle-aged (is 42 middle age any more?) but have this strange thing going on in my ear and have the feeling that my luck has run out.
I belong to a number of discussion forums but this has to be the most thoughtful, informative, and supportive place I've ever set my cyber foot in. I've read the posts where after people are cleared from the AN diagnosis they just disappear, so I was never sure what else it could be to parallel the symptoms so closely. I live just north of Denver so I've already done some research (thanks to posts here) about the treatment possibilities.... I guess I just listen to the tone and wait.... Any insights are very much appreciated.
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My understanding is that hearing loss in the higher frequencies is more common than in the lower frequencies for AN patients.
You would have to look at your hearing test to see if you fit the bill or not. My hope is not- but is sure nice to meet you and I’ll say a little prayer that you do not have an AN – even if the inhabitants on this forum are a great bunch …an eclectic mix of bizarrre pirates, sailors (some who get drunk on the wind ::) ), artists, sports fans … and heaven forbid -fisherman in a waterbottle. (Teasing Joef ;D )
Cheers,
4
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My ENT gave me the figure that 4-5% (not a typo--between 4 and 5 percent) of people who are MRIed to test for ANs actually turn out to have one. I guess the best reason to do an MRI early on is that it gives a clear answer.
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Well, thanks. That confirms some other things I've read. Based on what I've been reading here, I moved up my MRI to this coming Friday (before I leave the country). Not knowing is just as anxiety-provoking as a confirmation of AN. So, I moved it ahead a month. All of you have been great -- even just the few posts along this thread. How many choose meds for the MRI? I've had a MRI for C-spine and did okay.... Should I go with the drugs? I could go either way.... I am not too concerned about claustrophobia nor do I want to put myself through 45 minutes of sitting in a tube wide awake. What say ye?
Again, thanks so much.
Rob
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RAS,
Everyone is a bit different in their reaction to the MRI. Mine usually take about 45 minutes. And I actually find the weird noises the MRI machine makes to be entertaining, kind of like a science fiction band.
You can usually request a copy of your MRI, which would be given to you on a CD. And the CD has it's own viewer program. And you can also request a copy of the radiologist's report about the MRI results. The neurologist or ENT doctor that you are seeing may have slightly different take on the MRi results, since they may see MRI's of AN more often than the radiologist. The radiology report is written in "medicalese", so WIKI definitions are helpful in reading it.
Here's hoping for a boring radiology report. "Unremarkable" is a good word to see on the report.
Regards,
Rob
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The MRI seemed to go pretty quickly for me, so I didn't need any meds. Besides, I have 4 kids and that was the first time in years I got to lie down uninterrupted for 45 minutes. I'm actually looking forward to my one year post op MRI.
But I'd say, whatever makes it more bearable for you is the way to go. Did I hear mention of Margaritas? Maybe you can order one of those before the test starts.
Either way, good luck to you!
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I think they (Dr's) like to get the MRI done first thing .. it easy for them ... it normaly discounts a tumor and they can look at other sym ....
My GP sent me right away to get a MRI ... and even sent a note , which he did not tell me! ("look for a AN") ... I was only the 2nd person he has seen with a AN .. arn't I lucky? ::) ...
I knew something was wrong after the MRI ... they are not allowed to say anything ... but he saw the pool ball in my head and treated me strangely afterwards... telling me a can sit and rest before I leave as long as I wanted .... now remember -- I just rested for 45 min!!!... I almost fell asleep ... 8)
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I've always found that the 45 mins in the MRI machine passes much more quickly than I think it will. It helps that they usually play music at you through the machine. As Lori said, I take a bizarre enjoyment in being able to lie down uninterrupted for that long! ;D
Just make sure the MRI is with contrast (sometimes ANs are visible without contrast, but they shine bright white with it), and that they give you earplugs. Those machines can be awfully noisy and you don't want to damage the hearing you have left!
Good luck, and let us know what you find out.
Katie
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Thanks to everyone for the advice and for getting back to my thread so quickly. I'm scheduled for Friday at 2:45 for MRI with contrast (they tell me "with and without" when I called). No meds for me I guess. I recall when I had my C-spine done that it was just hard to stay perfectly still -- swallowing, breathing all seemed to be exaggerated inside that tube. The doc has been good about getting right back with results. So, perhaps on Monday I'll know something one way or another. I have no idea how many of these he has seen (the ENT, that is) but I'll soon find out.... I'll spend the weekend with my fingers crossed. I will be sure to let you know what my results are.... Thank you so much.
Rob
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Hi RAS and welcome!
Good for you, getting the MRI thing over. I don't think you will regret the no drug thing for the MRI. It is a piece of cake. They talk to you etc....and let you know how long the next set of films will be. You don't need to be still for more than 6 or 7 min. for the longest set. Some of them are as short as 3 min. Then, half way through, they slide you out to get the contrast injection. They want your head to stay in the same position but you can move your arms, legs and even scratch your nose if you want to between the films.
Nice to have you on but I hope you can leave again. JodieK just found out that she does not have an AN and she was sure she did.
Good luck, Kathy
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Hi, RAZ:
I hope the MRI results are negative for an acoustic neuroma.
As you know by now, the set-up for an MRI head scan keeps your head very rigid but the time usually passes quickly. If you were at all claustrophobic, it would have been a problem, so I trust you were not. Awaiting the results, right along with you.
Jim
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MRI is complete, but no results yet. It's almost noon Mountain time on Monday and I haven't heard yet from the doc. Keeping my fingers crossed. It's tough not to jump out of my skin anytime I think my phone rings. This could be a life-changing day....
As everyone said, the MRI was not tough. About forty minutes -- the first thirty or so were images without contrast. And, on schedule, they slid me out and pushed in the contrast -- then slid me back in for another ten or so minutes. A slick little mirror device was used so that if I had my eyes open I was looking at the open room. Totally made it feel like I was not inside a tube. Very, very clever. Modern technology and the cleverness of people never ceases to amaze me.
Like a lot of you, I started a blog of the experience. It seems cathartic. I'll post here one way or another with the results. Thanks again to all of you for the wonderful support. Waiting here with a strange sense of dreary anticipation (and that high-pitched screech in my ear...). -- RAS
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Way to go on getting through the MRI!
I'm praying that you won't be one of us AN'ers ... but know that you are always welcome here if you need support if you do.
cheers,
4
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let us know what it DOES turn out to be ... people seem to vanish when its not a AN ;D
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Hi Rob,
I am also in the post MRI waiting period....and it too is driving me nuts.
I've had high pitched whine in left side for quite some time. Finally went to ENT a couple of weeks ago, had the hearing test, was told that I was showing "mild/moderate" high frequency loss on my left side. He said chances are slim, but wanted to rule out an AN, so off to the MRI tube I went last Friday morning. My "official" follow-up appt. isn't until Dec., but I'm trying to call the Dr's office now to get at least an indication if I have something to validate or discredit my fears. My resonable side of my brain is saying..."don't worry, look at the odds".....but the high pitched whine 24/7 is saying otherwise and playing to my fears.
I just want an answer, then I can move to the next step.....whatever that may be.
john
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John,
Sounds like (no pun intended) you and I are in EXACTLY the same situation. Moderate hearing loss, high pitched sound, waiting for MRI results. Even your sentiments about "validate or discredit my fears" is precisely how I feel. It's 3:30 PM here -- I'm going to call at 4:30 PM if I haven't heard anything by then. Best of luck to you. -- Rob
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Well, at 5:30 PM the medical assistant called to give me the news: no tumor. According to the report, there is no tumor although there is some "age-related change." Great news for me. I still, however, do not know what the problem is -- I have an appointment for Friday with my ENT to discuss what's going on in light of a negative MRI.
As I wrote at the outset, this is an incredibly supportive place. I will continue to keep an eye on this board and will let you know what, if anything, seems to be causing the symptoms that originally supported a possible AN diagnosis. Too, I am going to make a donation to the Association.
Thanks to everyone who responded to my posts and the anxiety that fueled them. I'm hoping as well that John receives a negative diagnosis. Keeping my fingers crossed for you, John. -- RAS
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Hi Rob,
That's great news....I'm very happy for you and thank you for the words of encouragement. I am still waiting for my call. Was told yesterday that 3~4 business days is normal for results to come back in.
I am certainly interested in what other causes or treatments they may recommend for your on dealing with the tinnitus.
take care,
john
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Whew.....just got a call from the Dr. and the MRI came back negative....what a relief!
Now....like Rob.....I also will have my follow-up appt next month to see what/if any other options are available for my 24/7 high pitched friend.
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WOW Great NEWS!
Sorry you can't be part of our "exclusive club" (tease grin LOL) - but it appears you do not meet the credentials...
But hey really this is great news. Be thankful (yes even for negative results) enjoy life and "keep moving forward!"
Cheers,
4
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Yay! That is great news for both of you! Even greater news will be to hear that something will fix your symptoms. I'll keep my fingers crossed for that.
Maybe if you promise to hold one eye open, plug one ear and walk like you've had one tee many martooni's, the Non-Newbies in the group might let you play here anyway - without meeting all the credentials!
Lori ;D
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Hi Rob and John,
It is good news to hear that you don't have an AN after all. If you like this forum, and it sounds like you do, I'm sure others like myself would be interested in finding out what other conditions and treatments go with symptoms of hearing loss, tinnitus, and fullness. It comes up fairly often on this forum, and getting some information from you about what else it might be, and what might work to treat it, would be useful.
So please feel free to stick around awhile and let us know what you find out. You can always let the next "maybe" person know that it is not always a neuroma, and that would good for them to hear from a bona fide "in fact not" case such as yourself.
Steve
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Thanks everyone for the support....my heart truly goes out to you guys that have AN's and have endured your treatments.....you are truly brave people, and I totally respect the good work you are doing on this forum on a daily basis for us people that couldn't spell AN last month, but now find ourselves in MRI tubes.
I will accept Steve's invite to stick around and share anything I learn for my "non AN" tinnitus & hearing loss. My follow-up with the ENT is not until mid-December, but I will certainly post any possible treatments after I meet with him.
take care,
john
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Hi, All:
To the extent that this is at all usefu to my initial post, the post-MRI follow-up with my ENT was, well, helpful and then again not-so-much (at least for a definitive answer).
His diagnosis is (at least for now) eustachian tube dysfunction, noting that this is a rather elusive area to treat. My early audiogram noted a eustachian tube problem (they mechanically pressurized my ear to see what happens), which is consistent with the "full" feeling and my inability to equalize the pressure in my right ear. This leads to muffled hearing and could be related to the ringing. It does not account, fully, for the hearing loss in the upper frequencies and does not necessarily account for the ringing, either. They all can, however, be related. I have been given prescriptions for both oral and nasal steroids and will wait it out for another four weeks to see if anything gets better. Who knew that the eustachian tube is still a mystery? And, indeed, is not really a "tube" at all but "a potential space" (according to the doc). I still have all the same symptoms (ringing in the high frequency area, fullness, and hearing loss) so we'll see what happens. Again, as the doc noted, treating this basket of problems is less than straightforward but the MRI was clear.
So, now, that's what I can offer. I hope that this is helpful to someone out there....
My best to all of you -- and I, too, will continue to stick around and share whatever I can find out.
Rob
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Hi Rob and John, our "honorary" members. :)
Rob, the diagnosis does sound kind of vague, doesn't it. Maybe some steroids will take care of it, who knows? Here's hoping for the best. I will be watching to see where both cases wind up. It is curiosity on my part, but it will be helpful to others who don't have ANs to know as well.
Steve