Worried I may have an AN

[Jessi]

Balance issues began for me almost 4 1/2 years ago when I was 22 years old.  I'm now 26.  When my balance problems started 4 1/2 years ago but doctor said it is Anxiety and dismissed me and recommended CBT therapy. After a couple months with continuous balance problems every day, I went back and said something is not right!  I had blood work, cat scan and a mri done.  All normal.  Doctor told me to relax, I was fine.  She said I'm a busy mom and try to relax, it is all anxiety.  I went on for another 4 years like this.  I only lived with the balance problems so long because I was told it was nothing and the doctor apparently ruled it out.  Fast forward to this past March I developed a new symptom.  Pulsing in my left ear everyday for 9 weeks then over the course of another 3 weeks it started to disappear. The pulsing was completely gone in my ear after 12 weeks.  I have no pulsing anymore.  I went to the doctor about it, which sent me for another mri.  Did more blood tests. Said my ears look fine.  Btw way, my balance still a major symptom of mine even after 4 years.  Tests and mri came back clear again.  Then I was only left with my balance being a problem, feeling unsteady, like on a boat.  Now for the past month/month in a half I've been dealing with my left ear clogging up when I swallow or drive then it passes after a minute or so much will happen often when I swallow.  Also my ear feels kind of full, hard to describe.  When I lean over with my head down then bring it back up my left ear makes a noise like there is water in it.  My left ear also has a dull ache in it most of the time now.  I forgot to mention I also had a hearing test done 4 months ago which was fine. 

I've been referred to an ENT and I see her in 6 longgg more weeks.  I'm really nervous as I believe I have an AN that has not been noticed because my mri tests were not done with contrast.  I have 4 children and I'm so worried about this.  My doctor thinks it may be labyrintis or a vestibular problem if some sort and I was told by the doctor it is very reassuring that the two mris I had done 4 years apart were clear, even tho done without contrast.

I have 4 children and it worries me so much. some days I feel so down about my balance problem, and feeling like I'm on a boat constantly...with no answers and nothing to make me better... And I worry so much it is in fact an AN.

What do you all think from my story.... I'd like to know your opinion if you have time... Thanks.

Jessi:  I did not post this duplicate inquiry in the AN issues section because I think it has more readership here.  Thanks  Clarice

[Elliott]

Hi Jessi
It could well be an AN, maybe it isn't. The good news is that you are going to a ENT specialist. The other good news is that ANs are slow growing so 6 weeks, although seems like an eternity, is not going to make a lot of difference. Contrast is really needed to pick up an AN, as you are aware. I am sure that, especially if you ask for it, the ENT doctor will ask for the contrast. Keep being proactive. My first symptom was pulsing in my ear. I had it for about 3 months, then it went away, then it came back a few months later. Hearing tests came back normal. I took about 3 years to convince my doctor that something more was going on. Keep being proactive, we are responsible for our own health. Try not to worry too much. ANs are life changing, but not life ending. You can still be an excellent Mom, leading a vibrant life, after an AN is diagnosed and treated.

[Jessi]

Thanks for replying.  I'm worried if I do have one, I have had symptoms for 4 1/2 years and I'm worried it might have gotten big enough to be life threating.... 6 more weeks to see ENT then it will be another wait for the MRI.  I'm just trying to think positive that I had a MRI 4 1/2 years ago and cat scan which we're clear... Then another mri 4 years later and you think it would of grown some to show on a mri without contrast?  Am I wrong?  Also my hearing test was fine 4 months ago....

My balance has just been SO off for 4 1/2 years.... Not normal.... And then my ear having he unexplained pulsing for 12 weeks.... Now it clogs for a few seconds when I swallow....

[CHD63]

Hi Jessi and welcome to this forum .....

As Elliott said, it could be an AN, but it could also be something else that mimics symptoms of ANs, such as Meniere's Disease, labyrinthitis, etc.

While MRIs with contrast can pick up even tiny ANs, MRIs without contrast and CT scans can usually see at least a shadow of larger ANs.  Audiograms can be perfectly normal, if a suspected AN is not growing towards the cochlea so that is not a reliable way to tell.

All this is to say, hopefully you can try to relax until you have your next ENT appointment.  As I am sure you know, stress can make all symptoms worse so it really is important to use whatever relaxing technique you can.  I find yoga and meditation to be very effective, as well as my personal faith.

Many thoughts and prayers.  Let us know what you find out and how you are doing while you are waiting.

Clarice

[Jessi]

My doctor wasn't even going to send me to the ENT, I insisted.  I also told her the mri should of been done with contrast and she didn't listen to me and stated if the ENT thinks it's necessary then she'll do it.  She said the mri I had in June would of shown growth of an AN from the mri I had 4 years ago, if I had one.  My doctor said the radiologist compared both MRIs... The one from 4 years ago and the new one I had in June and said they are both similar with no change.  I don't think she's right though.... As AN are slow growing and it is very possible to see no change.  I ended up going to the emerge a few weeks ago because of how off balance I was and I was so sick of it.  I told him my story and he told me the same thing as my doctor, that it would of showed some growth from my other mri and contrast isn't necessary but he's not saying I don't need one with contrast.  He just said it is very reassuring that I've had the clear mri.  He did not for me besides tell me unfortunately people do have inner ear problems where they feel off balance and off all the time and my doctor is in he right direction sending me to the ENT.

I feel so nauseous in the mornings like I could get sick this past month.  I don't know if it's my nerves or what.  I'm sick of waiting for answers.  I'm sick of feeling in well.  I feel like a lot of my life has been wasted.  This has been going on 4 1/2 years and there is so much I don't do because of it... One being going to nursing school.  Because I just don't feel good on my feet.  I'm sick of this.  I won't feel good until my appointments are over and results of tests are back... Which could be another 2 months really.  Some days I'm almost quitting my job because I feel like I can't cope.  I'm a personal support worker and I do community care by going into the homes of my clients.  I get all panicky in their homes worried I will faint, or fall, pass out ... Something , because I feel so disoriented.  Imagine it was something so little as a minor inner ear disorder and I'm just blowing things out of proportion? I don't think it will be that easy though......


I'm sick to my stomach with this I'm also so sick of complaining to my husband how I feel so off balance all the time etc . Or telling him I can't work because I'm so off balance... Adding stress to him... He is supportive but I know he is probably sick of hearing about this and how unwell I feel.  He thinks I should listen to the doctor and stop worrying, but I think my doctor has been wrong about the reason for my balance problem all these years.  And she's wrong about the mri without contrasts.... My husband thinks I worry too much, which i do, but I feel like I'm right with this.  My doctor has always told me it's anxiety causing this, yet I'm on no medication.  She has always said your a busy mom take time for yourself.

I'm not a fan if my doctor as she dismisses a lot of things.

Sorry for the longgggg rant.

[Jessi]

How reassuring do you think my last post is regarding the two mris I had spaced apart 4 years that I got done for my balance issues?  My doctor thinks pretty reassuring as well as the Emerge doctor. But I know they're not done with contrast so I'm completely on edge.  It is really hard to wait for my ENT appointment, which is 4 weeks and 6 days away then to wait for an mri appointment. I'm having horrible anxiety about this and I just feel horrible. I am left with my thoughts and worries for weeks and I feel so alone and scared and not understanding what is going on with me.  It's so hard to go to work, I just want to quit.

[lil_lyd]

Hi Jessi, I was diagnosed with an Acoustic Neuroma in 2006 by a CT Scan. I went to see my ENT when I lost my hearing and he thought my acoustic nerve was swollen and prescribed some steroids. I took steroids for 14 days and I was a mess. I had really bad side effects with it. One day I was feeling very sick due to the medicine, I was very dizzy (which before I didn't have dizzy spells) and had other symptoms due to the medication. I went to emergency and told the doctor that I had lost my hearing and and was taking steroids. He ordered a CT scan due to my hearing loss and the dizziness and he came back and told me that the CT Scan with no contrast showed the tumor. After that my ENT ordered an MRI with contrast to follow up and I had it done just to confirm. My tumor was 2.5 cm when I had the CT Scan so of course it was seen through a CT scan. I have read here on this site that if it is a smaller tumor you do need an MRI with contrast. I had no other symptoms other than the hearing loss. I would recommend to try to relax as anxiety can make everything worse. I know it is very difficul when you are feeling so sick but maybe stressing about it is making you feel worse. I hope you feel better!!

[jaylogs]

Hello there, just wanted to chime in and wish you good luck and hope you get some results.  Nothing is worse than having something but the doctors saying that there's nothing wrong.  That being said, I have seen a lot of people come and go on this forum who had similar stories and then after the MRI was done, no AN.  There's a lot of things that can mimic symptoms of an AN.  An AN is something you really don't want IF the doctors can find out what is causing all your balance issues.  For a lot of AN patients, we've all had some sort of pre-procedure balance issue that gradually lessened as time went by because the balance nerve gets damaged by the tumor so the other ear's nerve will compensate.  Not a 100%, and not all the time.  After 5 years I still find myself toppling over a little at the strangest moments.  So I guess what I am trying to say is the chances of you NOT having an AN is better than even. I don't have any official statistics other than the 1 in 100,000 or so people get this.  So it's not real common.  But you are doing the right things, being insistent AND if you can get that MRI with contrast then you'll know once and for all if you do have one.  Whatever the outcome, I'm hoping that someone will find SOMETHING and you start feeling like a human being again.  Hang in there and let us know how it goes?
Jay

[Jessi]

Thanks.  I'll will update on how it goes. I got put on the cancellation list for the ENT so hopefully someone cancels and I get called to go sooner than my appointment date.  I also made a doctors appointment that is on the 30 th... I'm telling her to put the referral for the mri a/ contrast in as I don't want to wait until oct 20 to ask ENT to do it.  I want this over.  I'm also requesting more blood work to be done to try to see if there is ANYTHING we can find out that is making me dizzy/off balance.  Like maybe something like maybe I'm diabetic? Who knows.  I'm asking for a referral to a neurologist as well to look at my balance issues. And that but not least I'm going to see if I can start CBT therapy at my doctors clinic as there is a doctor that does it there, to help me cope with how I'm feeling and my fears that the balance makes me feel. Eg. Going to work, I want to quick as I feel I'll fall over at work and maybe even pass out.  I've seen this doctor 4 1/2 years ago for CBT when the balance problems began and she helped a bit.  Right now I feel like something swaying in my head as I type, it's so hard to explain, feels like I could pass out. And my balance is so distorted and making me tired.......I don't know

[jaylogs]

Hiya Jessi!  Good, glad to hear you got your appointments in, hopefully answers will be found!  Your balance/dizziness issue sounds pretty extreme, more so than is typical for an AN patient (although it does happen) but the length of how long you've been experience this IS quite a bit longer than usual. So yes, please let us know what you find out! Take care and good luck!
Jay

[Jessi]

Thanks.  I'm having A LOT of sinus pressure lately I'm wondering if maybe my balance problems are related?  4 years ago when I had the cat scan it did show a lot of mucous (sorry) stuffed up in my face, I remember my doctor telling me that.  Even though I don't feel congested I wonder if it still could be a sinus problem/allergies?

Is it even typical to have sinus pain/pressure with a an? My nose/ between my eyes feels so much pressure and then it'll go up into my forehead as a headache.....

[Jessi]

I think when I see my doctor I will ask to be tested for allergies.... I've wonder if maybe I developed an allergy to my german shepherd dog.... I never use to be allergic to bees in my life until a few years ago, so I know even if I was ok with dogs before I could still develop an allergy.... Who knows... This has been going on so long. My ear is achy today and has clogged up a few times....

[Jill Marie]

Hi Jessi,

It's late and I need to get to bed as I return to work tomorrow after a much needed vacation.  Just wanted to tell you that my tumor started causing me hearing issues in 1st grade but I didn't have it removed until I was 35, I'm now 57.  I'm so sorry you are having such a rough time, hopefully the next doctor appointments head you in the right direction, whether it is an AN or not.  Just wanted to let you know as someone else mentioned, if you have a tumor they are SLOW growing.  I understand your wanting to get some answers, wanting to not have balance issues.  You just want to feel normal again and enjoy your life with your husband and children.  I hope after all this time you get some answers!  Jill

[joyce04]

I'm a newbie also..waiting for me diagnosis.  Everyone is so supportive and helpful on this website..my dr told me to avoid the internet! He said the boards would all be soooo negative and scary 

[Jill Marie]

Hi Joyce,

Your dr is right to a point, what you read can be negative and scary but the honest truth often is.  However, as you said you will find support and help on this site that you won't find elsewhere.  I had my surgery 22 years ago and wish that I had this site to go to then.  I've been around here for quite a few years and keep coming back as I learn more all the time and help others when I can. 

There are lots of people here to help you, not because we are paid to but because we've been down your road.  Take Care, Jill