ANA Discussion Forum
General Category => Inquiries => Topic started by: DebbieDoo on February 18, 2009, 10:55:43 am
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Hi all.
I'm new. I'm scared, and I am probably asking the same questions as so many others when they are first searching for answers. I'm sure you get tired of hearing them, but I guess I just need to talk to others about it, maybe to calm any fears? Support, I guess.
I am 42 years old. I've had ringing in the ears for years. I honestly thought it was normal, that everyone has that to some degree. But for the last year or two, I have had some trouble with hearing. It wasn't so much that I didn't "hear" a sound, as much as I couldn't distinguish the sound. I could hear someone say something, but not always tell you exactly what was said. It tends to be just one ear, my left. Loud noises bother me also. Sometimes my ears are really sensitive to the loud noises, even if I can't always distinguish the sounds...hope that makes sense.
I have suffered with vertigo off and on for years, but 6 weeks ago I suffered a bout that lasted for more than a week. I stayed in bed with nausea and vomiting as well. It was so much worse than typical "dizziness", this was dizziness on steroids! It was so powerful when it hit, so sudden, that it would literally take my breath away. It has gotten a little better with steroids and antivert, but I still have issues when changing positions. Rolling over in bed or tilting my head to look upwards seem to be the triggers for now.
I went back to my primary doc yesterday, who sent me for an immediate hearing test. Long story short, he thinks it may be a nueroma? He's ordered another test to "check the firing of the nerve"? then if it shows positive, will order an MRI with contrast.
It's not cancer, he says, so that eases some fear, but I am worried about it.
I'm afraid that since the vertigo was so severe last bout, it might warrant having to treat it somehow, and that scares me....as does doing nothing.
Also, he found a 10% loss in my left ear over the right in hearing tones and such, but when it came to discriminating speech and such, I had 98% in the R and only 72% success in the L. He looked at the ear and behind it, etc and says that there is nothing wrong with the ear itself. He concludes that there is something going on with the way the nerves are firing or the way the brain is interpreting the sounds?? ???
Are my symptoms classic? And, will my "hearing" ever return? I'm too young for this. :( If it turns out to be this, should I insist on treatment or wait? I'm worried about things getting worse and having to live another 40 years with progressive loss and vertigo. :(
Thank you for your time and for anwering questions from yet another person wanting to "diagnose themselves" or freaking out over the possibility of having this. I know you probably get it frequently. thanks. :)
DebbieDoo
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Hi debbi! It`s normal to be scared. You are also doing the right thing on acting on whats making you scared. Once you get to the bottom of things and come up with a plan of attack your fears should diminish. At least that is the way it is for me. In any case your going to be alright! This website has provided for so much support which you can follow to so may to sucessfull outcomes. Prayers are with you, Mickey
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DebbieDoo~
Glad you found us & hope that you can get some answers. Most of us are not medical doctors, but have either been thru this ourselves or someone close to us so we know what it is like! Try to sit back and take a breath until you know something for sure...I know that is hard, but it won't help to get all worked up! ;D There are certain approaches that lend more toward losing your hearing than others...that is why it is better to see what you are dealing with. The size & location of an Acoustic Neuroma play a HUGE part in determining the course of treatment. And even though it seems like a HUGE deal right now, losing the hearing in one ear is not the end of the world. I had mine AN removed when I was 25 and have spent the last 13 years w/out hearing or any kind of assistance (there are many things available now to help with single side deafness - SSD) and it hasn't been that bad. I have a very active life and went on to have 3 girlies! Again, I am not a doctor, but the fact that you have had so many bouts w/ vertigo & dizziness makes me thinks that IF you have an AN, your body is already starting to accomodate for that and so you PROBABLY won't have to deal with it for the rest of your life! I have unlimited long distance so if you are in the US and would like to chat, PM me your phone number and I can give you a call.
K
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DebbiDoo,
Let me jump on the bandwagon and welcome you to the forum. First of all, breathe. You haven't been diagnosed yet. As Kaybo said, there's almost no help gained from freaking out about what MIGHT be. Secondly, Kaybo's exactly right in that living with SSD isn't as bad as it seems. Yes, there are situations that lend itself to being difficult but all of that can be managed either by controlling the situation or by BAHA or TransEar (two very popular options for those with SSD).
Next, I would say that the gold standard in a AN diagnosis is an MRI with contrast. IF you are determined to have one, size and location of the tumor guide your decision for treatment. You're right, they're benign and almost never end in death (unless untreated and it grows to an extremely large size). Relax, IF you have an AN then you have options for treatment.
Do what you can to get an MRI with contrast ordered by your doctor. You will be able to rest easier KNOWING what you're up against. You and your doctor can make a plan of attack and treat this (if it warrants treating right now) or you can watch it to see if it continues to grow.
Welcome to the forum. I can remember last April being in your shoes. I remember the uncertainty and fear well. This is an AWESOME place to come for answers because we all have either been there or have someone we love that has been there and we'll lend our support and help you through this journey.
Regards,
Brian
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Welcome Debbie,
You are alright to be scared because you don't know for sure what is causing your vertigo and dizziness. I hope you find out soon, whatever it is. Some people go for years without a diagnosis. And, if it should be an AN, you should get several opinions about treatment (watch and wait, surgery, or radiation). If it is an AN, you will be ok. There are many issues that need to be dealt with after treatment. For me it's been additional hearing loss, headaches, balance, dizziness. But if you stick around and ask for help, ask questions, and ask more questions you will learn to deal with them. Some get resolved, others may not. But you will be ok.
About your hearing coming back...often damage an AN causes is not reversible. Before my surgery I had 60% word recognition. After my surgery, I was left with 20% word recognition. But it is not the end of the world.
So go get a definite diagnosis and let us know either way if it is an AN or not.
Good luck
Syl
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Hi, Debbie, and welcome! I was right where you are now almost exactly one year ago...I did not yet have a diagnosis, but had a pretty good idea that I did have an AN after a bit of research on the internet. Know just what you mean about rolling over in the bed bringing on the vertigo...what a horrible feeling...I came here just prior to my MRI (and diagnosis) and received such great support and good advice. I am now about 3 months post-op and life is good and very near normal for me, despite the SSD and a bit of lingering wooziness.
As Brian suggested, do breathe and know you've come to the right place for your questions. Many, if not most, people here went years before being properly diagnosed, so you're not alone. But, the ONLY way to know if you have an AN by way of an MRI (w/ contrast). Until then, do try to relax, much easier said than done, we know. Research and ask as many questions as you'd like. We'll help as best we can.
Good luck,
Cindy
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Welcome Debbiedoo,
Finding out I had an AN at 44 scared me. I was in a state of shock. I was not ready for my life to end... I had too much to do. I had just finished school and made a career change, I was happily married with three beautiful children. Once the shock wore off I was pissed, mad at the world. Why me?
I understand and I self diagnosed before any doctor. I kept saying could it be an AN? My family doctor said "Nope, there is no pain associated with an AN". REALLY????, guess what I had one .. I went 10 yrs before it was found.
Take one step at a time. Prepare yourself. it is not cancerous. Be strong and let us know what you find out. Know that we are here for you.
I lost my hearing, among other things. Guess what life goes on and I live my life to the fullest.
Michelle ;D
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Thank you all so much for your replies. It's been very helpful. I can't help but feel, though, after researching this, that this could very well be what is wrong with me. I don't usually do that. I'm usually a pretty optomistic person, but this just seems to fit exactly what has been going on with me. I'm still waiting on the doc's office to set up the tests. When I know something, I will be back to let you all know. Until then, I hope you don't mind if I hang around the forum a bit. :(
Thanks again,
Debbie
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Debbi ~
I'm sorry you're suffering with worry but, unfortunately, this is fairly typical with newly-diagnosed AN patients. I realize that you haven't had the definitive MRI with contrast that would confirm what seems to be a very cautious clinical diagnosis by your doctor of an acoustic neuroma, but you seem to be assuming that you have it. I'm not a physician and I won't attempt to 'diagnose' your symptoms long-distance but they could be caused by something other than an acoustic neuroma. A gadolinium-enhanced MRI should tell you and your doctor whether you actually have an acoustic neuroma or something entirely different that is generating the symptoms you've described.
If we go forward on the assumption that you have an acoustic neuroma, I can assure you that an acoustic neuroma is not cancerous - and treatable. If the tumor is small (usually, under 3 cm) it may be treatable with irradiation, which is non-invasive. Endoscopic surgery is also being used more widely now, so that could be another option. Yes, micro-surgery may be indicated but until you have an MRI-confirmed AN diagnosis, I wouldn't start worrying about that. Unfortunately, lost hearing usually doesn't return, whether you have surgery or radiation to address the AN. Fortunately, there are specialized hearing devices (BAHA - Bone Achored Hearing Aids) that can help you regain some hearing. However, many of us who are SSD (Single Side Deaf) get along quite well with only one 'good' ear. I'm one of those folks. :)
I trust that once you learn more about acoustic neuromas and the various methods of treating them as well as receiving real-world information from other AN patients here, you'll move past the angst and paralyzing fear you're experiencing, see the situation realistically and find the strength to deal with it successfully, as many others have. We'll do all we can to help you do that, Debbi. Please let us.
Jim
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Thank you, Jim. You have all helped me to calm my fears. I think when you hear the words "tumor" and "cranial nerve" and "hearing loss", it tends to lead to fear. Even when you hear the words, "USUALLY benign", the human brain tends to automatically jump to the "what if" stage....at least mine does. I feel a little better about things today....more optomistic and I have you guys to thank for that. :) It's going to be ok, no matter what. It is what it is, and I can't change that. Just change the way I chose to deal with it.
I've dealt with beniegn tumors 3 times before, one "pre-cancerous". This shouldn't be new to me. I guess I was just more concerned because it deals with my hearing, and because it's near the brain. I am truely at peace today. :)
God is good.....He's always good.
DebbieDoo
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Debbi~
Glad you feel better today! ;D One day at a time...
And yes, God IS good!! :D
K
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Debbie -
a belated hello - and a belated welcome ;D
As others have said, if you think you have an AN you should have a MRI with contrast to tell you one way or the other.
If it is an AN, it's perfectly normal to be scared (I know I was), but don't worry too much - it's definitely not the end of the world. We've all lived through it and have many good tales to tell.
Please keep us updated on your diagnosis.
Jan
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Hi, DebbieDoo! I think we may be related! ;D
It's quite normal to be scared. Any time we're faced with a situation that is out of our control, it creates stress. When that situation has the possibility of impacting our lives, it's normal to be scared. I think it would be a much worse sign if you were not feeling scared. It's often the not knowing that is worse. I've read many posts here where people actually describe a sense of "relief" when they get the diagnosis, good or bad. At that point you have enough knowledge to start making decisions on how you proceed. Right now I'm in a similar situation as you are. I don't know if I have an AN. It's quite possible that I don't, and that my symptoms are being caused by one or more less serious reasons. However, my symptoms match those of an AN, and it's possible that the reason for them is an AN. But, we don't have enough information to know and we're really helpless to do anything at this point. Until tests are made and we know, we can research and educate ourselves as well as talk to people for support, such as the very friendly and understanding people here. However, once the final diagnosis is in, we can take control. Even if it is AN for you or me, we can start to make decisions about our treatment, understand the complications based upon the size and all of the other factors. And if it's not an AN, we can remove that from the equation and try to determine what it is, which will likely not impact our lives any more than our current symptoms already do.
I find the waiting the worst. I did have an MRI in 2005 which ruled out AN. However, it wasn't with contrast and my symptoms are still there and getting progressively worse. Did they miss it? Is it just a progressive hearing loss? Who knows. I keep flip/flopping between thinking that it is, indeed, an AN and that it absolutely could not be an AN. Until I get the final word, I'll continue to worry and experience stress, thinking it is and wondering about my future, then knowing it isn't and thinking that all this testing and worrying is just silly.
Worry is normal and drives us to learn about possible outcomes so that we're prepared when the answer finally comes. You're doing the right thing by talking about it and asking questions!
I'm hoping for the best for you!
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Hi Debbie and welcome. As you know, the issues you are having could be caused by an AN or other issues. As noted, please see if you can obtain an MRI with contrast to confirm the sight of a "mass" (ie: AN).... and if not there, hoping you get answers quickly so you will feel better soon.
wellness wishes to you.. and again, welcome.
Phyl
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Well, I'm a little frustrated. Doc's office is closed for Mardi Gras. They won't be scheduling anything until next week. :(
oh, yeah....
Happy Mardi Gras, Y'all! ;)
DebbieDoo
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Hi Debbie,
A belated welcome from me also. Believe me, "scared" is a pretty accurate description of everyone's first wave of feeling after being told what was wrong. For some, it's relief, because it's taken so long to get a correct diagnosis and it's so good to know that what you have has a name, in this case two names: Vestibular Schwannoma or Acoustic Neuroma. And it's benign, which is part of the relief. But, still, nobody takes too kindly to having something growing inside their head. :(
You will know soon enough what your situation is exactly, and then you can go from there. Then you will be discussing options for taking care of the little beast, if indeed you have one. You can "nuke" it , like I did, or you can have it surgically removed. This depends on size of the beast, of course, and your personal preference. Make sure that you talk to "well-qualified and highly experienced" surgeons and radiosurgery people. This is very important. Make sure you get a well-balanced look at all of your options. This is very important.
Looks like you've gotten some good support and answers already. This is a great site for support and information. We are glad that you found our little hideout, and if you are indeed diagnosed with an AN, you are more than welcome to visit us as often as you like.
I didn't read everyone's posts word for word so I don't know if I'm duplicating an answer, but as far as your hearing goes, once it's been damaged, it's damaged and you won't regain whatever hearing that you have lost. Tinnitus usually will stay with you, too. Bummer, I know, but that's part of the AN story line, sad as that is. Believe me, if somebody came up with a cure for tinnitus, that person would be a hero and make a fortune! The balance issues most often resolves itself over time as your other balance nerve takes over and learns to handle all of the balancing duties on it's own. It takes some time. There is also Vestibular Therapy available, and you might ask about that if your dizziness continues to be a problem for you. And the healing time varies with individuals. Some people have severe balance issues and some have minor balance issues. A few have no balance issues that they are aware of, but a compromised vestibular system causes all sorts of things besides just being dizzy or having vertigo. A really good article to read is this one that explains the workings of the balance system and the consequences of an impaired system. I experienced some of these things long before I knew I had an AN. I hope you read this.
http://www.hearinglosshelp.com/articles/balancesystem.htm
Hang in there.
Sue in Vancouver, USA
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Hi, Debbie:
The "firing of the nerve" test your doctor is talking about is probably an ABR, or auditory brainstem response test. This is a fast, non-invasive and completely painless procedure where the amplitude of the signal transmitted along the hearing nerve -- on its way to the brainstem -- is recorded at several spots along the length of the nerve. A severely degraded test result (little or no amplitude at several locations along the nerve) is often -- but not always -- an indicator of an acoustic neuroma (a neuroma is a tumor originating on a nerve). That said, an MRI is the only definitive diagnostic tool for determining if one has an AN or not. The ABR test is far less expensive. Your doctor is trying to save you and/or your insurance company some money by doing the less expensive test first. The problem, however, is that a negative ABR test result is not conclusive. That's because many people who have an AN don't have any hearing loss.
BTW, a 10% variance in hearing ability between both your ears is a very small amount and may be due to other causes besides illness (e.g., wax buildup in one ear, a poorly fitted test set on that side, etc.).
Most cases of vertigo improve a lot within a few days and then gradually resolve over time. The exceptions are those cases involving an AN or Meniere's disease. If you are having low-frequency hearing loss, Meniere's is suspect (but not necessarily the case; it could be an AN or other condition that's causing the problem). If it's high-frequency hearing loss only, you can pretty much rule out Meniere's. Progressive high-frequency hearing loss accompanied by recurring bouts of vertigo could be caused by an AN, but possibly by something else.
The only way to know for sure what's going on is to get a brain/IAC (internal auditory canal) scan -- an MRI with contrast -- to check for an AN, an anatomical problem with the IAC (such as a split in the bony canal), and signs of any other disease such as multiple sclerosis which may be causing your problems. But again, if your hearing loss is in the high frequencies only, I would suspect an AN (on account of your recurring vertigo).
Please press your doctor to get an MRI. It's the only way you're going to get definitive answers.
Best wishes,
TW
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The "firing of the nerve" test your doctor is talking about is probably an ABR, or auditory brainstem response test. This is a fast, non-invasive and completely painless procedure where the amplitude of the signal transmitted along the hearing nerve -- on its way to the brainstem -- is recorded at several spots along the length of the nerve. A severely degraded test result (little or no amplitude at several locations along the nerve) is often -- but not always -- an indicator of an acoustic neuroma (a neuroma is a tumor originating on a nerve). That said, an MRI is the only definitive diagnostic tool for determining if one has an AN or not. The ABR test is far less expensive. Your doctor is trying to save you and/or your insurance company some money by doing the less expensive test first. The problem, however, is that a negative ABR test result is not conclusive. That's because many people who have an AN don't have any hearing loss.
I found a document that described a study comparing ABR, MRI and CT scan. It talked about risks of AN and pros/cons of the various tests. If I remember correctly, the statistics found that ABR testing found AN's only 21% of the time. I'll see if I can find it again if anyone is interested.
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I had an ABR test, and it showed that my left side hearing nerve (the AN side) had a better signal than the right one. My hearing loss on the AN side is attributed to reduced blood flow to the cochlea leading to loss of the hair cells in the cochlea. Or something like that.
I would also like to congratulate DebbieDoo and ScoobyDoo for meeting up on the forum. :D
Steve
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Hi Debbie! How are you today? Hope things are going better for you each day and you can find the information you need.
Briefly about me - i followed my sister's story over the last year as she described her symptoms, went to the ENT and finally had a diagnosis after the MRI with contrast. (aka Bigsister) Well, i had fullness in my ear, hearing loss, some ringing and 2 ENT visits locally over a 10-12 year period, with only hearing tests and docs telling me i was getting 'old' (at the age of 40!) Fast forward to today - after my sister told me her diagnosis last Fall, i went to a major med center, let the ENT do hearing test, and then told him my sister's story AND asked for an MRI order with contrast. He wrote it on the spot - and you can guess the rest of the story (see signature line.) I have an AN too.
Anyway - i did want to the know the cause of my symptoms - i like facts and stats as much as possible, that's just me. The doc told me the results over the phone and asked what i wanted to do. I said W & W for now, see you in 6 months. He said that would be good and made the next appointments for me.
Was i scared - in a word, yes. Scared for me, scared for my sister. But now that i know what i am dealing with, i can monitor it and maybe never have to do anything, (or maybe not.) In the meantime, i am still glad i am learning what is going on and can gather the information i need for future reference.
Everyone here has been so wonderful, encouraging and supportive! No one wants to join this AN 'club', but now that i know, i couldn't think of a better place to be!
My thoughts and prayers are with you as you continue your journey to find the answers.
Keep the faith!
Sincerely,
Sue
PS Sounds like you have a good PCP. No local doc picked up on my symptoms and it really used to make me mad. Now i realize they just didn't have AN experience.
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I would also like to congratulate DebbieDoo and ScoobyDoo for meeting up on the forum. :D
Thanks, Steve! What are the chances that I would find my long, lost sister Debbie on here? I think this calls for a Scooby Snack! :P