Hoping I don't have AN but looking for answers.........

[astone]

Hi All!

Where to start? 
My "history", it started about 20 years ago with a vertigo attack while I was vacationing in California, upon return to MI saw my family doc, told it's an inner ear infection and can take "months" to go away.............this pattern occurred several times every few years.
At some point, I visited an ENT who diagnosed an episode I was having as benign positional vertigo..........
Over the years, things progressed to vertigo more frequently (still not too often) esp while/after traveling, this would linger and I'd feel confused/disoriented-what people call brain fog etc.
A couple years ago my hearing was affected, high frequency loss.
Last summer I had a severe vertigo attack that lasted all day and I just never felt better afterwards (dizzy, off balance, etc) and along with this attack came the high pitched tinnitus and fullness/pressure in my left year that has not left since.
Saw the ENT again, he ran hearing test, ENG and forget what other tests..........
He said "probable" meniere's
Not satisfied (as I was continuing to have real balance problems), my family doc said MENIERE's and sent me for vestibular therapy, which helped tremendously............and put me on a diuretic and follow low salt diet

Fast Forward to this year, ENT reran annual hearing test, which was sign. worse than the last one (again only the left ear is affected and high frequency-"atypical" to menieres)
Audiologist told me, well since "all" your tests are "normal", your hearing loss is a sign of an aging ear-did I mention that I am only 43!!
Not happy with that at all or their rec. for a hearing aid I might add, I have seeked further help.

I saw a nuerotoligist yesterday who said he is very concerned about the hearing test, he did mention things like meniere's and migraines as being a possible culprit but also said when they see a patient with my symptoms and this type of hearing (unilateral high frequency hearing loss-profound at that!) they have to mention the possibility of an acoustic nueroma.
Now I have tried to put this out of my mind until further testing but it's impossible!!
I will be having an MRI w contrast next week and follow up with specialist the following week and he will be doing an ENG that day as well.

I am not looking for a diagnosis but does any of this sound familiar to you? 

To summarize:
Left ear unilateral hi frequency hearing loss, constant tinnitus, fullness/pressure in ear, dizziness/vertigo, general off balance feeling as well as head & neck aches, did have some minor facial numbness a couple years ago but never thought much of it til now, also a new symptom popped up a couple weeks ago, strange sensation behind my eye maybe starting at the left ear, feels like something being pulled behind my eye through my ear and sounds like when you yawn really big, I now weird and hard to describe oh and did I mention I am so tired!!

Any comments would be appreciated!

[astone]

I forgot to add that "strange sensation" I mentioned is accompanied by my eyes watering and burning, no idea??

[Jim Scott]

Hi - and welcome.

I'm sorry you're beset with these exasperating symptoms but I'm glad that you're not seeking a diagnosis because, as you probably realize, our members are not physicians but (mostly) AN patients with a lot of compassion and eagerness to answer questions, offer advice and, most of all, support to those dealing with an acoustic neuroma. 

I know this isn't what you want to read but frankly, although your symptoms certainly do correlate with typical AN symptoms they could also be caused by something else.  Should you have an acoustic neuroma, the MRI (with contrast) should clearly show it.  At that point, you'll have your answer and can weigh your options and move forward from that point.

Of course, although an AN is almost always benign (non-cancerous) and treatable, they do pose a challenge to both doctor and patient.  That's why this website and these discussion forums exist.  To assist you through the process of (possible) diagnosis, research, decision, procedure and recovery.  I think we do that pretty well and our members are always ready to befriend and support a 'new' AN patient at any stage.  Should your MRI show a tumor, we'll be here for you.  Heck, we'll be here for you even if it doesn't!    Please stay in touch.

Jim

[Funnydream]

If you don't have the insurance to get a MRI. Just get out the phone book (under MRI) and start calling the companies. I found a private company that does MRIs with and without contrast for $450.00 if you pay cash here in Fort Worth Texas out of 18 companies in the phone book.

Most companies wanted around $700.00 w/wo contrast if you pay cash.

I know its allot of money. But getting your head scanned in 3d on the inside is amazing to me for that low of money. Not to mention you will have a scan to compare to later in life if you find your MRI to show normal. Make sure and keep the disk or film they give you. So you can check it out on your pc and save it for later in life.

[astone]

thanks for your responses

Jim-def not looking for a diagnosis just some reassurance that if this is AN that all will be okay and that there could be other things causing my symptoms, I just want answers, crazy as it sounds, at least if they said "yup, there it is" then I'd have a reason for all these crazy things happening to me over the years! 
I know Meniere's can cause these symptoms as well but the part that doesn't match that diagnosis is the hearing loss in the high frequency tones.

Funnydream-I am lucky right now to have great insurance so the MRI and further testing etc is not a problem at all but thanks for the suggestions!!

Thank you both for your comments.

[Mark241]

Like Jim said, the MRI will show it, if it is a An, there are quite a few options depending on the size. The not knowing is far more scary than the knowing, believe me. Let us know what the results are if ya want. There's more information here than anywhere Else. Good luck to you.

[CHD63]

astone .....

As Jim said, your symptoms do have a similarity to patients with acoustic neuromas.  It always bothers me when I hear about people whose doctors have done all the other tests ..... audiograms, ENGs, etc. but do not order an MRI with contrast when a patient presents with unilateral hearing loss, vertigo, etc.  I know it is undoubtedly insurance driven (and that is a whole other story) but when the MRI with contrast clearly will tell whether a patient has an AN or not, it just makes more sense to me to just order it and find out!

I pray you do not have an AN, but if you do, you are ahead of the game by knowing we are here and stand ready to help in any way we can by sharing our experiences.

Let us know what the MRI reveals (and make sure it is with contrast when you go for the test).  Most facilities will give you a copy of the CD ROM at the time and you can pick up a report 48 hours later.  (However, keep in mind it may be better to have the ordering doctor share the results with you so you do not jump to incorrect conclusions.)

Best thoughts.  Clarice

[astone]

Clarice-
I totally agree (now that I know about acoustic neuromas) that a doc should order the MRI right away. 
This recent appt was with a brand new doc (neurotologist) as I was frustrated with my old ENT for obvious reasons-last time I saw his audiologist she told me since all my tests were normal they reccommend a hearing aide for my hearing loss which she explained had become very pronounced and I asked why and she said natural progression of aging, HA, that's when I gave up on them........I am only 43, this hearing loss has progressed over the past few years, couldn't they see a "pattern"??
They never even ran a CT, let alone a MRI, only 2 series of balance tests over the course of 2 years!

Yes, the MRI I am having next week is with contrast, this doc is a "specialist" and is very knowledgeable of inner ear disorders so I am in good hands no matter what the results of the MRI are.
And yes, they will hand me the CD next week after they do the MRI for me to hand deliver to my doc!

Again, thanks so much all and I will be sure to update in a couple of weeks regardless of the outcome............

Another thing I was wondering, did many of you "suffer" for many years before a diagnosis was made, did the docs confuse it with Meniere's or Migraines or other vestibular problems? 

[leapyrtwins]

astone -

if this is an AN, you will be okay.

Jan

[arkansasfarmgirl]

If you don't have the insurance to get a MRI. Just get out the phone book (under MRI) and start calling the companies. I found a private company that does MRIs with and without contrast for $450.00 if you pay cash here in Fort Worth Texas out of 18 companies in the phone book.

Most companies wanted around $700.00 w/wo contrast if you pay cash.

I know its allot of money. But getting your head scanned in 3d on the inside is amazing to me for that low of money. Not to mention you will have a scan to compare to later in life if you find your MRI to show normal. Make sure and keep the disk or film they give you. So you can check it out on your pc and save it for later in life.

CRAP!!  It cost me $850 *with* insurance.  They charged the ins company $4500...  the radiology reading was extra.  I knew it could be done cheaper--I can get my horse done for $1200-1500, and that includes anesthesia, but I didn't know it would be that much difference.  Wow!