Not Diagnosed yet but searching for answers...

[michelle]

Hello There!

My name is Michelle. I'm a happily married mommy of 4 beautiful little kids, and just turned 30 years old. I have always been extremely healthy, and aside from the births of my children, have rarely been to a Dr. for any reason.

Well, in October 2009 I started to get bad headaches that left me nauseous and dizzy. I'd had a cold a few weeks before, and it seemed to have "settled" in my right ear. It wasn't painful, just felt like an annoying "fullness." I started regularly taking motrin and sudafed, hoping it would just go away. Well, long story short it never did.

I am a runner, and had to stop. I couldn't stand the "Thud, thud, thud" like there's something bouncing up and down in my ear/head whenever I run, jump, walk fast, etc. I started thinking maybe something had crawled in my ear and died. I don't hear a "ringing" in my ear, but more of a "woosh, woosh, woosh." It is completely clogged/blocked and does not come and go, it just is this way. When I plug my nose and blow air to "pop" my ears, only my left ear does anything.

Finally, my hubby convinced me to go to the Dr. a few weeks ago. I went into urgent care. The dr. said my ear looked normal, maybe a little refracted (?). He did a test where he blew air into my ear and said that my ear drum doesn't move, and it should. He said maybe there's air caught in my middle ear, and precribed steroid nasal spray for me.

Well, that didn't help at all. In the past couple of weeks, I started to have more alarming symptoms. The ring and pinky finger in my right hand have been going numb, and my upper lip area on the right side of my face feels tingly. This FREAKED me out, and I made a Dr. appt a few days ago.

This Dr. totally blew me off. He said that I should see a dentist for my TMJ (that I supposedly have in my jaw, but has never caused me any problems before.) He prescribed a different nasal spray, even though he said I do not appear to have any allergies or anything. Before I left, his nurse did a quick hearing test which, surprise surprise, showed moderate hearing loss in my right ear (completely normal in my left.) He ordered a referral to an audiologist for a more extensive hearing evaluation. I'm waiting for that to be approved by my insurance.

Meanwhile, this is seriously affecting my life. I'm finding it difficult to focus on caring for my children and the kids I take care of in my home child-care. I promised myself I would not turn to Dr. Google, but the symptoms combined have left me quite unnerved and I'm desperate to know what is causing it. Acoustic Neuroma kept popping up when I would enter my symptoms yesterday and it led me to this board. I have read a few of your diagnosis stories and some of the symptoms are eerily similar to what I'm experiencing.

Part of me just wants to go to the Emergency Room and demand that they do whatever test necessary to make sure I do NOT have some sort of brain tumor. Then I get a grip and rationalize with myself that I can wait and find out after the audiologist, and then I'm assuming I'll be referred to an ENT, and go on from there.

I'm not looking for answers, I know that only a physician can diagnose what's going on with me. I'm just scared and searching for some advice.  

I do not usually take over the counter medications, but I have been living off of motrin for my headaches and sudafed in some hope of relieving the pressure in my head and ear.

Also, when I turn my head, there is a grinding/squishing sensation behind my right ear at the back of my head that is so unnerving. Sometimes I will even be sitting still, and the "woosh, woosh, woosh" just starts in my right ear. The weird upper lip numbness feeling has only started happening in the past few days, and the numb right hand for a little over a week. Both symptoms are so alarming to me though.

I am supposed to run in a race in 3 weeks, and it is impossible for me to even walk fast without this terrible THUD THUD THUD in my right ear. It's driving me crazy.

I just want to wave a magic wand and have all of this disappear! :-(

Any advice or help anyone can offer would be greatly appreciated.

-Michelle

P.S. If it makes any difference, I live in Los Angeles, Ca.

[sues1953]

Hi Michelle,

Welcome to this forum it is a wealth of information.  I am so sorry that you are experiencing these symptoms, you are right to be alarmed.  After your test with the audiologist you will more than likely be referred to an ENT, as you know.  The best advice I can give is to have an MRI with contrast.  If you do in fact have a brain tumor it will show up and they can more than likely let you know within 24 hours.

It is a good thing that you live in LA there are really good Doctors there.  I will be thinking of you and praying for the best for you and your family.

Sue

[CHD63]

Michelle .....

Welcome to this forum.  Although I truly hope you do not have an acoustic neuroma, you certainly need some answers quickly to your troubling symptoms.

I do not know why some doctors blow off patients!  You know your own body better than they do.  You know you are experiencing new, strange symptoms.  In my mind, it is not the doctor's prerogative to make light of your concerns.  If I were you, I would kindly, but firmly, insist that these symptoms are indeed progressing to an alarming level and you are politely asking for an MRI with contrast be done to determine the cause.  It is imperative that it be done with contrast as this is the only definitive way to diagnose an AN.

Hopefully it will not be an AN, but you deserve answers to possible causes for your symptoms, beyond the ones suggested to you already.  Keep in mind, however, that fear of the unknown can make existing symptoms seem worse than they might be otherwise.  You need some relief from your fear.

Best thoughts and prayers and please let us know how you are doing.  Now you have a group of concerned friends!!

Clarice

[Lizard]

Michelle,
Welcome to the forum and I know it can be scary to have unexplained symptoms, but the symptoms for an AN can be any number of other conditions. Try not to panic as there isn't much you can do until you get in to see an ENT and have them give you an MRI with contrast. Also being in the LA area there is a great group who specializes in AN's at the House Ear Institute (HEI, do a search on it here, tons of info).  You could always contact them and request to be seen they shouldn't turn you down considering the symptoms.  Its worth it and they are the best of the best

I hope and pray you do not have an AN, but if you do we are here for you.  This forum is a wealth of information so please do not hesitate to ask the questions and express your concerns.

Hang in there,
Liz

[leapyrtwins]

Hi, Michelle and welcome to the Forum.

As others have said, the symptoms of an acoustic neuroma aren't always the same.   Some of what you are experiencing can be attributed to an AN - but then again these symptoms can also be attributed to many other things.

The only definitive way to diagnosis an Acoustic Neuroma is have an MRI with contrast.  You should start with an ENT, and if he/she doesn't find any other causes for your symptoms, insist on an MRI with contrast.

Good luck,

Jan

[sunfish]

I like Liz' suggestion to simply contact HEI and set up a consult (hopefully, your insurance would allow this).  This miight be a faster route to getting some answers.  If it's a AN, you generally have plenty of time, but if it's some other condition you might need your answers more quickly.  Take care, and know you're in my prayers.

[michelle]

Thank you to all who have replied.

Believe me, I do not want to find out that I have any sort of brain tumor. I wish, as gross as it sounds, that the Dr. would have just told me that there WAS a bug that crawled in my ear and died. He could have just removed it, and I'd be on my way. 

Yes, I am fearful of finding out that this is something serious. I have 4 little kids who are dependent upon me. I am reassured by reminding myself that the odds are in my favor and this is most likely nothing serious at all. 

Still, I have been in denial that anything is wrong, and clearly something is. This isn't normal, more alarming symptoms have started showing up, and it does not seem to want to go away. I just walked my son to kindergarten and thought what I wouldn't give for ONE hour of having my ear back to normal. It's becoming so debilitating for me. :-(

I will look up the House Ear Institute. I have an HMO though, so I have to be referred by my primary doctor for anything to be covered.

It's frustrating because I do not have a "regular" doctor. Like I said, I have otherwise been very healthy and unfortunately I am not very good at keeping up any yearly physicals or anything. I guess I could call up the guy I saw who referred me to the Audiologist and see if I could ask him to order an MRI with contrast? I feel like a silly hypochondriac.

I'm rambling now, and need to go pick up my little one from preschool. Thanks so much for the caring concern.

[Debbi]

Hi Michelle-
Well, first of all - you're NOT a hypochondriac.  My family doctor always reminds me that no one knows my body better than me.  If something doesn't feel right, insist on answers.  Don't settle for a pat on the head.  And, don't worry one iota about what the doctor may think - doesn't matter. 

hang in there - and demand answers!

Debbi

[michelle]

Thanks Debbi!

I just got the call from the Audiologist's office and I have an audiogram scheduled for tuesday morning. I guess I'll just go from there.

[CHD63]

Michelle .....

That's a start ..... be persistent though.

Clarice

[Jim Scott]

Hi, Michelle ~

Although the tests you're going to have may or may not discover an acoustic neuroma, you have a right to be stressed out, struggling with these very debilitating symptoms and a diffident doctor.  Although an acoustic neuroma is a benign (non-malignant) tumor that is treatable (via surgery or radiation) it isn't something I would wish for anyone, so I hope the tests actually will show something simpler to deal with. My suggestions is to ask the ENT (that the audiologist will likely refer you to) if he/she would order an MRI with contrast.  I know some doctors roll their eyes when a patient says "I saw it on the internet" but your symptoms do match those of a person suffering with an acoustic neuroma. Again, I hope this is not really the case but it's obvious that you need to find out and an MRI is the quickest way to do so.  If it shows nothing, at least you've eliminated one possible cause of your symptoms - and gained some peace of mind.

Please let us know what transpires - and welcome to the ANA website discussion forums. 

Jim

[james e]

Sorry you are here, but this is a good place to be. Some doctors just think some people are "head cases" but you sound like you are detailing your symptoms in a reasonable way. I found it rather unusual how many different symptoms an AN can cause...but there are lots of them. I went to my personal family doctor, an ENT, neurologist, internist, and nobody got it right until I had a MRI with contrast. I think there are so many diseases, bacteria and virus around that can mimic our symptoms, that it is very unusual for a doctor to jump right to AN as the cause. I had just had a stroke in April, and in December thought I was having another one. The MRI with contrast revealed my AN. The hearing test will not be enough to determine if you have an AN...it will be a basis of evidence that can support the next step which might be the MRI. I just had my surgery in March, and it has made my life much better than it was. I am a firm believer in physical fitness, and it will serve you well to stay in great physical shape by weight training or some other activity. My fitness REALLY helped me recover. If you have an AN, keep coming back here. Good luck to you and your family.

James

[michelle]

Thanks again.

I obviously hope the tests will show something simple too. Actually, I hope they'll show nothing at all, and the ENT will tell me exactly what's wrong with me, and that it's something super minor, and he can make it go away, and I will go back to being the active, healthy, happy person I've always been.

I didn't want to search anything on my symptoms, because I was SO afraid to find out that they could be signs of a serious problem. I have little kids who depend on me.

I have always been an extremely healthy, active, fit person. I used to run 4 miles a day, cross train, weight train, etc. Since october, I have not been able to do these things because of these problems. For the first time, EVER, I have been gaining weight and feeling out of shape. I *need* to figure out what is wrong with me, so that it can be taken care of and I can get back to being myself.

I'm sorry to vent here. I am just so frustrated and unsure. Just the thought of something being seriously wrong with me rocks me to the core. This is one of those "happens to other people" situations. Unfortunately, I've tried to pretend like nothing was wrong for too many months now, and it doesn't seem like whatever this is is going away on it's own anytime soon. It's time for me to face the fact that *something* is going on, and work towards figuring out whatever it is and dealing with it. (And praying and crossing my fingers that it's NOTHING bad.)

Thanks again for any advice or input.

-Michelle

[michelle]

Real quick, a couple people have replied implying that there could be many reasons for the symptoms I'm having.

Would you mind elaborating?

Thanks!

[michelle]

This morning when I woke up my ear felt worse than ever, and so so blocked. Lately, immediately upon waking I take motrin, tylenol, sudafed, and get the coffee going so I can get some caffeine in there, too. If I don't, I end up with "morning sickness" type nausea and headache.

It's tough being patient. I just want to know what is going on RIGHT NOW.

Again when I woke up I thought of just going to the ER today and asking for an MRI. I feel like it's going to take forever going through all of the Dr appointments and referrals and insurance approvals and waiting for openings, and more waiting, and copays. I just want to know. If someone could just tell me that I definitely do NOT have some sort of tumor or potentially life-threatening issue, I could handle these symptoms better while trying to figure out what's causing them. The thought that there could be something in my head, continuing to get worse while I just wait around makes me very uncomfortable.

I've read that AN's are very slow-growing. I feel like my symptoms have become dramatically worse in the past few weeks. I'm really afraid of it being something even "worse" than an AN. I just want to know what I'm dealing with. :-(