Acoustic Neuroma Suspected

[JodieK]

Hi all. I am so glad to have found this site. To make a grossly long story short, I will try to sum things up the best I can.
I have been sick since 2002. In 2002, I experienced severe vertigo, facial pain and migraines, along with brain fog, etc that came on after a bout of an ear infection. I was checked for everything under the sun. I got sick in September of 2002, and by December, my symptoms were not gone and so worrisome, I spent time at a hearing and balance center. they ran all kinds of tests on me, an ABR, a rotational chair device and a caloric test. Since I had already  had a brain CT scan, they did not perform another one. I was told everything was fine, and that I had atypical migraines, and given Klonopin. That never worked. Neither did a ton of other treatments. I have been tested from anything from HIV to AIDS to cancer over the last 5 years.

Just this past month, I got a new PCP and went in with the same complaint as usual. While the severe severe migraines and constant vertigo had relieved itself within six months of getting sick back in 2002- I still had the same complaints as I did then, and was surprised when this new PCP started digging into my files. I told him about my constant right ear feeling full, having pain in my ear ( under it actually and above it, and at the base of the skull), SEVERE facial pain on the right side that makes my jaw pulsate, eye dropping on that side, eye twitching on my right side and that forever swooshing and swishing in my ear that gets worse when I bend over.   I have pain that extends down my neck and into my shoulder on the right side and for years I have been saying I cannot hear out of that ear, and that it feels like something is stuck way deep in there. And for years, I have been told Im basically a crazy lady.

My new PCP did not think I was crazy and said that what I was experiencing with the swooshing and swishing was my heart beat, and rather worrisome since it was unilateral and accompanied by all this pain and neuro/ear symptoms. He diagnosed temporal arteritis, and put me on steroids. My blood work for that came back normal. However, in the meantime, today I got a phone call from my doctors nurse. When I was there on the 4th of September, I signed releases for him to get my med records. Here, come to find out, that in December of 2002, when I had all that testing, it was NOT normal.

I failed the abr test, the caloric testing on my right ear showed a unilateral problem on the RIGHT side, in my right ear, and I had nystagamus as shown on my rotary chair. He believes I have an acoustic neuroma and I have an appointment this wednesday with an ENT. I am OUTRAGED to say the least that my tests were NOT normal, but I was told they were and given a list of foods not to eat and klonopin for my atypical migraine. I have been to neurologists, dentists, chiros, you name it and none of them have helped me. I was even at an endocrinologist, and no relief, gynecologist, as I said.. you name it.

I dont know when I stopped putting the phone to my right ear, but I just cannot hear out of that ear. I also cannot walk around as I get a very odd feeling like a very low level sense of imbalance. It is worse in stores, etc  and a great way for a doc to call you an anxiety patient. By the way, their anxiety meds never worked. LOL.

My PCP said he wants the ENT to perform another ABR, and an MRI with contrast of the ear. Is that different than of the head???  He is going to talk with the ENT before I see her this wednesday.

Do my symptoms sound familiar? The worst for me is pain, and the inability to walk around without feeling way off, kinda spacey, like I don't know where my body is- just an odd feeling. At least with the vertigo, I could say HEY, I have vertigo but this walking and feeling weird thing is hard to pin down to describe.

Does anyone have or had severe facial pain with an AN? Headaches? That inability to walk feeling? Another thing I get is if I am flaring ( I call it flares because SOMETIMES i am OK, and most times, I am NOT), but if my symptoms are full on noise disturbs me and my hearing will go out and I will hear a loud pitched squeal in that right ear. I also get blurry vision and cannot seem to focus sometimes. Ive also heard bugs zooming by that just arent there. The left side of my face is completely fine. I have no problems there. Its all on the right.  Once in a while, if I lay flat on my back, I will feel like I am swaying on a boat, and other times, I will get what I call vertigo zaps out of no where that almost makes me fall out of my chair.

I have learned caffeine, smoking and alcohol ( specially alcohol) are  HUGE no no for me.

Has anyone experienced all this? The pain and swooshing in my ear also intensifies when I bath, eat, or walk around. It is not coming from a neurological origin, as I even had autonomic testing done and my blood pressure doesnt crash when that happens to me. It was finally my new doctor that said "its a vestibular dizziness, not a neuro one".. but it sure feels like it sometimes!

Thanks for any help.
Jodie

[hendi51]

Jody, my husband has a AN. He was diagnosed in May of this year. He doesn't have facial pain but I believe it depends where the tumor is. He has lost most of his hearing in his left ear and he has had dizziness since December 2006. His dizziness is actually bouncing. Everything he sees bounces and moves side to side. He also has the fullness, pressure and tinnitis. He walks like a drunk person because it looks like everything is moving. His surgeon don't want to do surgery right now due to existing heart problems. I hope they find your problem and get things taken care of for you. Good luck and you have found a great support site.

[Obita]

Hi Jodie and welcome to the forum!

Yikes.  That is quite a story.  Unfortunately, many of us were misdiagnosed for years also.  Not too many PCPs even know what an AN is.  Mine didn't, but he does now!

I can relate to all of your symptoms except the facial and head pain.  I had a very bad bout of vertigo for 10 days that eventually led to my diagnosis.  Once I was diagnosed, it was explained to me that the vertigo was (in my case) the straw that broke the camels back so to say.  My AN side vestibular nerve was so damaged by the AN that my good side was forced to take over.  Once the transition took place, the vertigo went away.  I still had the wierd spacey feelings in my head, my balance was off, my face was twitching like crazy, the fullness in my ear was awful, the tinnitus was buzzing, swooshing, chirping and electrical sounding but, no pain.

The MRI will be of your head.  This time, they will be looking for an AN.  I am sure that is what your Dr. means when he said it will be a MRI of your ear.  If it is an AN, it will glow on the scan after the contrast is injected.  You will be able to see it yourself if you look at your scans.

Good luck Jodie.  I hope you don't have an AN.  If you do, you found a great place to come to.  

Kathy

[Betsy]

Hi JodieK,

Wow, what a nightmare you have been through.  I'm glad you found the forum though.  A lot of us have had the same types of symptoms you have, in varying degrees and combinations.  I can relate to the vertigo and unsteadiness; it was a bad spell of vertigo last March that led to my diagnosis in April.  Until the MRI, my doctor was ready to attribute my symptoms to migraines and anxiety.

Make sure the MRI is done with contrast.  Without it, an AN will not show up.  I don't think they can just do your ear, it'll have to be your whole head.  Maybe they're talking about smaller "slices", which will show more detail.

It sounds like your new PCP is the kind of doctor who will get to the bottom of things.  You've been waiting a long time for an answer.  I hope you don't have an AN, but after all this time you deserve to know what's going on.  Please post again and let us know how the MRI turned out.

Betsy

[leapyrtwins]

Jodie -

I'm SO sorry to hear about all your medical problems.  IMO, the first thing to do is find out if you have an AN or not.  From what I know, the best way to find out is to have an MRI with gadolinium contrast.  Once the doctors know what your diagnosis is, you'll be able to decide how to treat it.

Best of luck.  Let us know how things turn out.

Jan

[Sue]

Hi Jodie,

I, too, wanted to welcome you to the forum.  So sorry about all the problems...but it is, unfortunatly, somewhat of a common story around here.  It took a year for me to get the proper diagnosis.  I do not have pain associated with my AN nor do I have headaches and for that I'm grateful. But I can certainly relate to your "spacey" problem.  That is pretty common with us ANers. Of course the hearing loss and tinnitus are part of the AN package also.  Some have the headaches. 

You should have had an MRI sooner!  But now that you will be having that, your doctor will certainly be able to see if you are, indeed, joining our ranks.

I certainly hope you get your proper diagnosis soon and that you can then get the treatment that you need. I am so sorry you've had such a bad time.

Kindest regards,

Sue in Vancouver WA USA

[Jim Scott]

Hi, Jodie:

I hope you don't have an AN tumor but I'm still pleased that you've found this site and forum.

Unfortunately, your story is not all that uncommon; years of symptoms accompanied by years of mis-diagnosis, with lots of tests and (ultimately) useless drugs.  Physicians that cannot find the cause of your symptoms inferring that it's 'emotional' are also not uncommon and it is always frustrating when that happens.  It appears as if your PCP is on the right track.  An MRI with contrast should show an acoustic neuroma, if one exists.  Although he said it was 'of the ear', I assume he meant of the head, which is the only way to locate a possible AN.  You might want to clear that up with him, just for peace of mind.

Your symptoms do sound fairly typical of an acoustic neuroma tumor, although you'll soon find that because we're individuals, there really isn't a 'typical' AN patient.  For instance, I drink coffee all day long and its never affected my sleep or anything else, even when my AN symptoms were at their worst.  However, for what its worth, unilateral hearing loss, imbalance issues and migraine headaches are all symptoms almost every AN patients experiences.  I never really suffered from headaches, before or after surgery, but I did have severe disequilibrium and total hearing loss in the AN-affected ear.  My AN tumor was huge and the neurosurgeon guessed that I probably had it 'in there' for 10 to 15 years.  Who would have guessed? 

Jodie, until you have a firm, medical diagnosis for an acoustic neuroma tumor, all you can do is wait and try to learn as much as you can about them, 'just in case'.  AN tumors are problematic due to their location but almost always benign (non-cancerous) and treatable with surgery, radiation or, sometimes, both (see my signature).  At this point, I would guess that just having a diagnosis, unpleasant as it may be, will ease your mind a bit as your long journey to find an answer finally ends.  I trust that you'll let us know what happens.  Please do, because we can relate to your situation better than most people - and we care.   

Jim 

[yardtick]

Hi Jodi,

If I as a betting woman I'd bet my last dollar you have AN and your facial nerve is involved.  Welcome to our club.  I have all of the symptoms you have described.  Actually I have a Facial Neuroma.  There are a few of us on this site.  The support kindness, an expert advice you will receive from other members of this forum will blow your mind. 

Keep us posted.

Anne Marie

P.S.  I'm sorry you are going thru this.....I know how frustrating and frightening it is.

[JodieK]

You guys are great. Thank you so much for all of your replies. I was completely down last night with facial pain, and ear fullness and jaw twitching. The jaw twitching has started this week.

Does anyone have problems sticking their tongue out? When I stick my tongue out, it dances to its own song. I CANNOT stick it out  and it be calm. It jumps and twitches. that is a very odd symptom for me.

It is so hard to pinpoint where the pain is coming from. it feels like its above the ear, below the ear, at the base of the skull behind/under the ear, and smack dab in my face.

Can anyone hear fluid swishing about in their head as well?

Tomorrow is the day I see the ENT.  I can say that I have seen SO many doctors and given SO many "AH HA, we know what is wrong with you" Moments, that I just have no faith in anything anymore. My doc thinks it is an AN, but me myself I am skeptical they will find the cause. it wont stop me from trying though.

You guys are great with answering questions. I sure hope I do not join your club, but a little part of me just wants to know for sure what is wrong, even if an AN. We can then all fight together. I do have a very small lump in my jaw. When I stick my thumb in the left side of my mouth, I can easily get it in. Sorry that sounded sorta weird. On the right side though, it is very hard to do that and I can feel a small lump IN MY FACE.

We will see what the doctor says. Wish me luck.      What do you all that get pain use for pain? Execedrin makes my symptoms worse, ibuprofen makes my jaw hurt like hades.. but I dont want to depend on vicodin or darvoset, even though those work a bit ( the rebound headaches are HORRIBLE).

And, do you all feel drunk sometimes? LIke you are looking through a fish bowl when you are not? Sometimes when I walk, I feel like I am walking on bubbles and have to look down to make sure my feet are going where they should.

Again, thank you all for your help. I feel very alone at times with all of this. I am having a "good day" today with not many symptoms. Is that normal? The come and go thing? I am so sorry for all the questions.

Jodie

[leapyrtwins]

Jodie -

don't apologize for asking questions - that's one of the reasons this forum exists.  I wish I had some answers for you, but I haven't experienced most of the symptoms you describe; hopefully others have and can respond to your questions.  It must be very frustrating to not have a definitive diagnosis.

I mostly just wanted to say good luck with the ENT.  Maybe tomorrow's appointment will shred some light on whether you have an AN or not.  Please keep us posted.

I'll keep you in my prayers,

Jan

[susier]

Hi Jodie,
  Sorry to hear about all you're going through.  I had that "funky" feeling for about 2 months and went from one doc to another until my ENT decided to do an MRI.   She sent me for 2 MRI's... one of the Brain and the other on the IAC's, which is stands for Inner Auctuary Canal, which is probably what your doc meant by an MRi of the ear.  The IAC MRI is where my AN showed up.  Good Luck with your appt.... and NO, you're not crazy!  I was getting the same thing from all my docs and like you, I saw every type doc except my dentist.... and he was next on the list.  I too have the feeling like I'm drunk, but it has started to get a little better.  Only happens once or twice a week now.  Hopefully yours will subside a bit too.  Hang in there and let us know how it goes.
 

[JodieK]

Susie,

Thank you for the MRI of the ear thing, and letting me know what it is called. I viewed on my CT report from 2002 "Suggest IAC" but never knew what it was. That must be what my PCP is talking about. I would like to go that route, I dont want an MRI missing it!!!!

I feel like a butthead, but I missed my appointment. My daughter has been sick since Friday, and well come yesterday morning for me to get up and travel to go see this doctor, I could barely move. My back was killing me horribly and I had no energy. I went back to sleep and by the time I woke up, it was past my appointment time, my head was stuffed, sneezing, coughing, sore throat from hades, etc - typical cold. Im better today with the sore throat but still REALLY sick. As soon as this passes, I will get back on the ball and get to that doctor. I feel horrible enough, let alone having to drive 1 1.2 hours to get there. Ugh.

Wish me luck.
Jodie

[xtine]

Hi Jodie,

I just found this sight and have been reading back about people's symptoms.  I susupect an ANA for myself as well.  I can totally relate to some of your symptoms- like the ear wooshing and sound when bending over, jaw pain, head pain, my face doesn't hurt a lot but feels tight sometimes, heartbeat sound in ear, fullness, dizzy or just general brain fogginess.  I also get those flare-ups like you explain as well as a shakey jaw when I open my mouth wide...  I first got dizzy with what I suspect was a viral infection but it seems like things never healed with my bad ear/side... maybe this is an early sign or something going on in there...??

I'd be very interested how your MRI turns out.  I get one for myself soon.  But in the meantime, I'm just waiting and worrying.

I've tried to read up on my symptoms but have yet to hear from someone who has that ear wooshing which is more noticable when bending over... have you heard of this symptom from anyone with an ANA?  or has your Dr. been able to expain it?

Most Doctors look at me like I'm insane and they don't have a clue what is going on with me... it's frustrating to say the least.

Hopefully your doing well.  Please keep me posted on your progress.

Regards,
Christine

[Richey]

Jodie and Christine,

I have a small AN on the left side in the canal and my most disturbing symptom intailly was with balance but right before I had Gamma Knife for it I had started to get that swishing noise in my left ear. An MRI with contrast should tell you the fact of weather you have an AN or not. I had two CT scans that did not pick it up.

My hearing gradually went away over a period of months right after the GK treatment but the AN has remained stable for over two years and I will be getting another MRI in Feb. with hopes of seeing a decrease in size or no growth.

These things are hard to diagnose but when I got to the right doctor he suspected it right away and told me that was why he was doing the MRI with contrast. That was the first time that I had ever heard the words acoustic neuroma.

Hope things turn out well for both of you.

Rich

[lori67]

I had the whooshing noise for years in my right ear.  It didn't really get worse when bending, but every time I would lay down on that side it would get worse.  It was actually loud enough to keep me awake.  Sometimes it would go away for a few months, but then came back.  I mentioned it to my then PCP and she put me on blood pressure meds.  Didn't really help, but I think after a while you start to think it must be normal and maybe everyone can hear their heartbeat in their ear.

It wasn't until last summer that I had my first symptoms and that was only a numbness in the side of my face, which I thought was due to a tooth that needed some work.  After having that tooth fixed, it still didn't go away, so being a busy Mom, I ignored it (I'm a nurse also, and I don't like to go to the doctor unless I already know what's wrong with me... We do make the worst patients) until I had more time.  Finally went to a new PCP in December and the first thing he did was order an MRI with contrast.  Should have gone to him first, I guess.  He has been in practice for a while and I am the first AN patient he's had.  I guess since we all have different symptoms it must be hard for some doctors to figure out what the problem is, but I would think with any of these symptoms, an MRI seems the logical thing to do.  Just remember that you know your body better than anyone else, so if you think you're not getting the right tests or treatment, question it.

Let's hope you just have something simple and easy to treat, but if it does turn out to be an AN, it's not a death sentence.  Yes, there are hurdles and times you'll feel sorry for yourself, and that's fine, but I think as you can tell from everyone here, they are all making the best of a bad situation.  There is definitely a new "normal" after treatment.  I occasionally remind myself that if you have to have a brain tumor, this is the one to have.

As far as taking care of little ones, mine were 4 yrs old and 9 months old when I had my surgery.  My husband took two weeks off of work and I had a friend come to stay with us for a week, but after that I felt well enough to do what I needed to do.  I wasn't exactly scrubbing floors and mowing the lawn, but I felt well enough to take care of the kids and that was all that mattered.  The dirty dishes could wait.  And I will admit, I sometimes use the "Brain surgery excuse" to get my husband to run the vacuum or wash those dirty dishes....ssshhhhh.... don't tell him.

Good luck at your appointment.  We all look forward to hearing the outcome.
Lori