ANA Discussion Forum
Archive => Archives => Topic started by: SVTCobra on October 04, 2005, 08:14:20 am
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Hello everyone! I just joined this board today… what an excellent resource!
I wanted to get some input from you based on my story. I’ve recently (in the last week) went to an ENT specialist for a hearing loss problem on my left side, and he conducted an ABR test last Tuesday which came back abnormal on my left side. I’m awaiting the call back from him on what happens next… but, I’d like some input from others.
Here’s my story from the start…
Back in 1989, I developed a high frequency hearing loss in my left ear along with constant tinnitus. I saw an ENT specialist at the time, and they conducted an ABR test and felt that it was normal. They concluded that I might have gotten a virus on my auditory brain stem nerve and it damaged the nerve cells. I took this and ran with it over the past 15 years or so.ÂÂ
However, in the last year I’ve noticed a dramatic decrease in my hearing capacity for my left ear. The ringing loudness of the tinnitus is much higher, and in the last 6 months I’ve began having weird vision problems. Also, I’ve begun experiencing balance problems as well of which I’ve never had before. Thus, I thought I probably just needed a hearing aid since I’m getting older, and I was tired of making my wife repeat herself over and over.
I went to the ENT doctor the last week of August 2005 (the day Hurricane Katrina made landfall, weirdly enough) and I tell him my story. He doesn’t mention AN, but I can tell that’s what he’s concerned about – he made mention that we are looking at a “high stakes poker game” with my condition, whatever that meant? He said they would conduct an ABR test and an ECOG test. He was hoping it might be Meneire’s disease or hydrops and we could fix it with medicine and diet. But, my ECOG came back normal last week. However, my ABR came back abnormal on my left side. The audiologist told me the doctor would contact me with what to do next, and that he was out of town at a conference. So, I’m awaiting their call back… my question is… does an abnormal ABR always indicate the presence of an AN, or could it be something else?
Do you folks think I could have actually had a very small AN in 1989 that they didn’t detect with the ABR, but it just grew slowly enough that I didn’t start having problems until now? I haven’t had any facial numbness or anything. But, this recent vision and balance problem makes me worry – it’s like I see lines and spots as I move my eyes from side to side or up and down. Also, I have had some numbness in my left arm and hand at times.
This waiting for the call back is awful… Thanks to all of you for your help!
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Hi,
Welcome to the gang!
And yes, waiting sucks.
Your story and mine are very similar - my hearing loss started around 91 or so, and was diagnosed until two months ago as the effect of many ear/throat infections as a kid. And, like you, it was finally an audiologist who said Acoustic Neuroma, based on my very abnormal right-side hearing test. I don't have the balance symptoms, but the deafness and tinnitus are the same.
That being said, the only way to truly diagnose an AN is via MRI with contrast. (They inject gadolinium, a magnetically responsive metal, into your arm during the MRI). Rather than waiting for your ENT to call back, I would call the office and state your suspicions that you might have an AN. That, hopefully, will get the ball rolling towards an MRI.
Of course, waiting for the MRI is also frustrating. If you live in or near a metropolitan center, you're likely to have a number of radiologists (with MRI's) nearby; if you're more rural, there will be fewer. As soon as you know you're being scheduled for an MRI, call your insurance and tell them what's going on - it may get the approval and scheduling process done more quickly.
Until then, keep busy! Waiting just drives me crazy!
Good luck, and keep us posted.
Josh
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Hello;
I would walk away ( actually run away ) from an ENT who is ordering merely those two tests and not an MRI. Even in 89' they had Cat scans which are better than no imaging. Probably an abnormal ABR however, would indicate either the presence of an acoustic neuroma or a problem more exteriorly located in the ear, such as Menieres. The head wired for an EEG and listening to clicks during ABR, tests the length of sound delay. Thing is, Menieres generally presents first with a low frequency loss and an AN, a high frequency loss. Also, Menieres usually presents with sudden onset, incapacitating vertigo while an AN pt. might notice some dizziness or sense of being off balance or nothing at all.
Best wishes in this!!
Russ
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Hi, Cobra.
We have similar stories! I've had hearing loss for at least 5 years and balance problems for that long, too. Just thought I was clumsy! I went for a hearing test in 1999 which they said was normal, but I couldn't hear well on the telephone on my right side. My hearing got worse until I went to an audiologist in 2004 August. I had a significant right-sided hearing loss and I was sent for an ABR. It came back normal with some nerve decrease and was outfitted with a hearing aid. It went back for repair a few times and in August 2005 I took it back in because it just wasn't working - nothing was clear. To make a long story short, I went to another audiologist for a 2nd opinion and he did a hearing test. He was surprised that I had a one-sided hearing loss. I had received an air-horn blast near my rt ear around 1995 and I thought this was the cause. He says you generally don't see a one-sided (asymetrical) hearing loss and even with an injury the opposite ear would show some damage as well. My left ear is 100%. He said that I need an MRI and a specialist to examine me before he can do anything with my hearing loss. I said that I had an ABR the year before, but he says that ABR's can miss things. He strongly suspects an AR, since my left ear is 100% and my right ear is very poor. It's getting worse, even over the past year. Tinnitus started about 6 months ago and is getting LOUDER. I also find my right eye is becoming increasingly blurry, but not all of the time. Sounds a lot like your situation!
From what the audiologist said, an ABR may not diagnose an AN (but it could). And yes, I think yours might have been smaller previously and is now larger. That's what I think is happening to me. However, it might not be an AN, either. I've heard from 2 people in the past 2 weeks who were suspects of AN that turn out to be free of AN. An MRI is needed to detect this. I would insist upon it. I'm scheduled for one on Oct. 24th. And, I must agree with you. This waiting is killing me. I'd rather hear that I have an AN and then deal with it than constantly wondering "Do I have one?" "Do I not have one?" "Is this headache caused by pressure on my brain?" You drive yourself CRAZY trying to second-guess what's happening! Get an MRI booked and then you'll know. I'm on the cancellation list and might get in earlier than the 24th, but at least I know that in 3 weeks my wait will be over. Three weeks of hell!
You might have an AN, and you might not. Who knows? An MRI will tell if you do or don't. All we can do is sit and guess. Keep up posted.
Please feel free to email me if you wish (jwilson(at)icsgaming(dot)com)
John
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Hey, Josh. How are you? Do you have an MRI scheduled?
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Russ,
I think my ENT specialist was basically doing the ECOG and ABR to confirm his suspicions of a possible AN before going the MRI route. He did tell me that an MRI would be my next step, but he just hasn't called back yet to schedule it.ÂÂ
It sounds like many of us have similar stories. I could easily live with tinnitus and hearing loss, that's the easy part. But the vertigo and vision problems begin to bring this into light where it becomes a bit frightening. My hearing loss is on the high side, and it basically came on gradually and has worsened over time. I just didn't realize AN's could grow so slowly.
With that said, does anyone know of an ENT specialist in the Tulsa, OK area who specializes in AN's?
Update: I just got a call back from the nurse who said the doctor hasn't reviewed my ABR test results, but he would do it today and call me back... it's been well over a week, geez.
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You may want to consider an MRI to rule out/confirm AN. Discuss with your Doctor---get an opinion. Best of luck!
Jerry
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You may want to consider an MRI to rule out/confirm AN. Discuss with your Doctor---get an opinion. Best of luck!
Jerry
Thanks Jerry. Yes, my ENT guy told me that he'd send me for an MRI if my ABR came back abnormal... I'm anxiously awaiting their call... hopefully today!
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Hey John,
Sorry, I realized that in my last post I didn't really explain where I am on this roller coaster ride. I've already gone through the MRI/meet the doctors/insurance approval/schedule the procedure fun. I have a 3+cm right side AN - it's being removed via translab on November 7 here in Las Vegas.
Josh
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My doctor called back today (finally) and said he wants me to get an MRI done as soon as possible.ÂÂ
I'm going in on Monday, October 10th to have it done. They said I should know something by the middle of next week.
-Darren
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Hi, Darren.
That's good news about the MRI. Let us know the results as soon as you hear them! I'll be thinking about you on Monday! :-\
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Hi, Josh.
I just got back from Vegas a couple of weeks ago. Had AN on my mind the entire time, though! Can I ask you something? Now that you know what you have and the treatment (which is still some time away), how do you find the waiting for treatment, compared to the waiting for diagnosis? Waiting for the MRI is killing me! But, once I know the results, I might feel differently about waiting for surgery/treatment/etc.
And to top it off, a good friend of mine at work had a few bad days. His wife had a severe headache for several days. She went to the hospital on Monday for a CT scan. Shortly after she was airlifted to Toronto and underwent brain surgery to repair a broken blood vessel in her head. She's back home now and doing well, but that was cutting it close!
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Hey JW,
I felt that waiting for diagnosis was much worse than waiting for surgery. There's just too many "What if" type questions when you're waiting for final diagnosis. Plus, you know less, so there's a much greater fear of the unknown. Once I knew what I had, what my options were, where I could go, etc., I was able to start making some informed decisions. Now that the decisions have been made, I feel much better. I a little impatient, but that's much better than the uncertainty.
I chalk that up to this: human beings enjoy having some semblance of control, and I didn't feel that way until I had ALL the facts.
How about you?
Josh
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My MRI was completed this morning... awaiting the results. I guess it can take a few days?
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Hi - My husband had his MRI results the day after it was performed. Be a pest and get them to give you the info! It's your head! I hope you want have to wait too long - that's the worst!
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I had my results back in about 4 hours...I agree..be a pest!!!
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I was told to wait 48 hours before calling my doctor... so that sucks. My doctor took almost 2 weeks to give me the results of my ABR test. :(
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Hey Cobra,
Glad you got your MRI done. Unless your doctor actually has his/her own MRI, you probably had it done at a radiology center, right? If that's the case, you can call them directly - they will provide you with a copy of the radiologist's report. This is a just a one-page summary of your MRI, but it will indicate if they found an AN. This is exactly what I did, and as I recall, I was able to pick up my report the next day. Although I couldn't actually see the pictures until I met with my doc, I at least knew it was an AN, and walked into that doctor's appointment both prepared and informed.
It was actually sort of funny - my neurotologist was putting on his best 'I have bad news for you' act as soon as he walked in the door. Very concerned look, serious expression, MRI film tucked beneath one arm. I think it threw him quite a bit when I started talking treatment options for him, but it also made for a much more pleasant discussion. He didn't have to calm me down about my brain tumor, so we were able to talk treatment right away. Very helpful.
So, I highly recommend calling the radiology office to see if you can pick up your report. One caveat: if you do have AN, take the measurement on the report with a grain of salt. Radiologists may only see a handful of these in a lifetime, and may not know how to properly measure them. My report read 'Probably 2.5 cm Acoustic Neuroma'. A 2.5 cm AN is right on the medium/large boundary, and I began my treatment research based on that number. However, when I met with the neurotogolist, he did a second measurement, and it was actually over 3cm, which is definitely a 'large' tumor. Use the radiology report as a starting point, but wait for your doctor to do a second measurement. (My 3cm AN, it turns out, is pressing against my brainstem - not a good candidate for radiosurgery.)
Okay, I'm done - sorry for rambling on!
Hope all goes well - keep us posted!
Josh
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My husband was able to pick up his MRI the next day - and was told to take it to his appt with the neurologist that was scheduled for the next day. So we were able to see there was something there before we ever had a chance to talk to a dr. Doesn't really cause for a good nights rest - when you see a blob but don't know what it is.
But I wanted to 2nd the comment on taking the MRI report with a grain of salt. His film didn't come with a report - but when we finally got a copy a few days later - it read his AN was 2.5 x 7 cm - yeah - that's right - 7CM! After much freaking out - I finally was able to have several other Dr's confirm it wasn't that big - it was a typo on the report. It's more like 2.5 x 2.8 cm. They still haven't corrected the report - but I guess that doesn't matter. We are using the measurements Dr. Brackman stated - I figure he's seen enough to know what size he is looking at :-)
dana
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The doctor's office called today and said he's received the report, started reviewing it yesterday, and he wants to review it further... and that he'd call me back today or tomorrow. Well, obviously today is shot (and he didn't call). If he doesn't call tomorrow, I guess I'll call the radiology clinic.
As weird as it sounds, I'm hoping they find out what is causing my problems. I think I have a bigger fear of the results coming back showing no explanation, with nothing being done to figure out my problem. I know... that sounds weird, but that's how I feel...
Thanks.
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Cobra,
You're not weird at all! Being able to put a name on the cause of your symptoms is SOOOOOO much better than not knowing! Even if it comes back that you have an AN - at least you're not in the dark anymore.
Knowledge, from diagnosis to treatment to recovery, is power when it comes to your health.
I would call the doc first thing tomorrow morning, and not hang up until you get an answer. Better yet, if you can spare the time, be at the door when the office opens.
Good luck, and keep us posted!
Josh
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Hey, Cobra.
I completely understand how you are feeling, and I think that Josh hit the nail right on the head.
I'm having my MRI in under 2 weeks and I'm feeling the same way that you are. One the one hand I feel pretty odd and don't want people to think that I want to have a brain tumor. However, at least it will provide and explanation to me and offer an answer for what I've been experiiencing over the past 5 years. In fact, I didn't even know that my one-sided hearing loss was unusual. If they say I don't have an AN, then I'm faced with the question "what's wrong then?" If I do have an AN, at least there's some comfort in the fact that it's benign and treatable. You're not saying "I hope, oh I hope, please let me have a tooo-more." You're saying "I hope that there's an explanation for everything I've been going through and that it's not going to be anything that's too bad." And that you're not having to go through months of further tests, waiting for the results and not having any answers.
Good luck tomorrow. I hope that you can get some sleep tonight while waiting.
John
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Your replies have really given me some encouragement for the day! Thanks so much. Me and my wife are dying to know the results of the MRI.
I do want to know what is happening with me, as all of us do for ourselves. I felt weird admitting that I want them to find something so I know what is wrong, but it's the truth. Now, I realize we are all in the same predicament at one time or another. When my hearing went out 15 years ago, I was told "it was probably just a virus that attacked my auditory nerve, don't worry about it". Well, that's fine and dandy if my hearing stayed that way instead of getting markedly worse with my speech recognition going in the crapper as well.
I've struggled over the past few weeks to come up with what could make an ABR come back abnormal to the point of ordering an MRI, if it isn't an AN? I've lived with the hearing loss and tinnitus for many years, but the vision probs really bug me. And, during the course of last summer I was experiencing short term memory problems - which is frustrating being an engineer. I chalked it up to getting older, but I was forgetting things left and right... which is unusual for me, as I've never been this way.
I originally never looked into MS as the cause as well, but it makes me wonder... my wife brought up MS, and some symptoms seem to match, but who knows? I assume symptoms of MS would show up on the MRI as well as lesions on the nerves?
Thanks for your words of encouragement, we will see what today brings in the way of results (and hopefully a phone call).
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Well, just as I predicted, my doctor called me this morning and told me my MRI came back normal. So, that's actually good news because there isn't anything desireable in having a brain tumor.
He told me that he wanted to see me on Friday because he wanted to discuss my way forward and some things on my MRI, so who in the world knows what that could mean?
I guess I'll find out on Friday.
Thanks to everyone for your support...
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Cobra,
Hurray! Congrats on not joining the club! ;D
Now, I hope that your symptoms are explained by something simpler and easier to treat. Keep the faith, and please keep us posted!
Josh
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Cobra,
I'm sorry that your membership here was DENIED! ::) Seriously, though, that's very good news. Whew! Must be a load off your mind! (No pun intended). If I'm not mistaken, that makes 3 people within the past 2 weeks that have had MRIs rule out an AN. This looks like a very positive trend. Now, the old saying says that good things come in 3s. Perhaps that can be extended to 4 when I go for my MRI the week after next?
I guess the people in the forum will give you some time to pack up your things and get OUT OF HERE. Maybe I'll have to take my leave of these very nice people, too.
JW
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Thanks. I'm actually glad it wasn't an AN. I'm anxious to see what else could be causing this, so that will be my new quest. I'm curious what my ENT dr. wants to discuss on Friday.
John, good luck on your pending MRI, I hope all turns out well.
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Well, I was mistaken on my ECOG test results... it did come back abnormal.
I've been diagnosed with Meniere's disease along with hydrops. I was under the impression that my ECOG test was normal, but my ABR was so abnormal that they addressed it first with an MRI to rule out an AN, then deal with the Meniere's And hydrops due to the abnormal ECOG test.
I've been put on a low sodium diet with meds. I didn't realize it, but my "good ear" is going downhill too, so I've got to really be careful.
Good luck to everyone else, and I hope your MRI comes out good John! Thanks!
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My ENT found my AN. You must get an MRI with contrast right away. Forget about any other test. This is the one that will tell you FOR SURE!
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My ENT found my AN. You must get an MRI with contrast right away. Forget about any other test. This is the one that will tell you FOR SURE!
knd, my ENT had an MRI with and without contrast performed on Monday of this week, and it came back clear showing I do not have an AN. I originally thought that's what I had, but the ECOG test showed it's Meniere's / hydrops.
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Sorry, I'm not helpful. I am new to all of this. I have a problem of my own which is just ringing in my ear. I is gettting worse. I had gone to a doctor and he had told me there is nothing you can do about it. I know you are not a doctor, but do You think I should insist on a MRI? I have lost some hearing in that ear also.
Sorry to bother you with this. I don't know who to talk to. Anyway, thanks for listening.
Krystal
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Krystal, I assume you are seeing a ENT specialist... if not, I would recommend you do so.
I'm not a doctor either, but I can relay to you how my testing came about... Over this past summer, I noticed a profound hearing loss coming about in my left ear along with very loud ringing and periods of dizziness and unsteadiness. Then, my right ear started ringing. I finally called a doctor to get it checked out.
First, I saw an ENT specialist who conducted an audiogram test to confirm my hearing loss (I had hearing loss in both ears, but really bad in my left ear). Once this came back showning my left ear had hearing loss, he ordered an ECOG test and an ABR test. My ABR test came back abnormal for my left ear, thus an MRI was ordered next. I was found to not have an AN on my MRI, but my ECOG test showed I have Meniere's disease which was causing my problems... and I'm getting treated for it now.
Good luck.