Newbie - looking for support

[PamelaDV]

Hello all.  I am new to the board.

I have not been officially diagnosed with AN yet.  But I've been doing a lot of research.  I have had the ABR (BAER) and ENG tests done - both came back abnormal - which prompted my ENT to send me for an MRI - which I had Friday morning.  This was after investigating my middle ear to see if there was a cholesteatoma, etc...

I first presented with dizziness, some numbness and tingling on the left side of my face, fullness in my left ear, gagging (not associated with nausea or coughing), and headache on the left side of my head occassionally.  I have since noticed that my headaches are really bad at night and worst first thing in the morning.  The dizziness is not positional - it's just constant - sometimes worse than others.

The vestibular testing was AWFUL!  I don't want to ever do that again. 

The MRI was fine - I don't struggle with that so much.  My doctor put on my order to send the films with me.  So I immediately took my films - wrote a note to my ENT and attached it to the folder that I wanted him to call me LATER THAT DAY.  I know what he's looking for - I want some answers.  I have a follow up appointment but it's 10 days away and I don't think I should have to wait that long - do you?  I have left numerous messages with him and his nurse to call me - tell me something - even if it's you aren't sure and  you need to check with a different specialist.  I get it - I just want to be in the loop.  He never called me on Friday.  Tomorrow is Monday and I plan on throwing a hissy fit until I get answers.  I love my ENT - his office staff can go jump in a lake.

Anyway - my real question in the midst of all of this is ...  If this isn't an acoustic neuroma - what on earth could it be?  The vestibular testing shows (in my ENT's words) that the problem is not with my ear - it's with my brain.  When you look up the common symptoms of Acoustic Neuroma - I HAVE ALL OF THEM (that was a bit un-nerving to discover).  If they don't see an acoustic neuroma on the MRI - what will we do next?  I'm so miserable - I need some answers.  I am the sole bread-winner for my family - I can't continue on like this.  I have 3 small children and I'm just miserable.  I just like to be prepared and I'm wondering if this isn't AN - what on earth else could it be?

Any thoughts or support you can provide would be so very helpful.

Thanks!

Pam

[Battyp]

Hi Pam.  Sent you an email but wanted to tell you we're here for you!  Sounds pretty typical to what I went through even the two week wait...That is so not right! 

[Palace]

Pam,


I'm also new here but, slightly farther in this than you are however........not by much.

You might want to read this:  http://www.dizziness-and-balance.com/disorders/tumors/acoustic_neuroma.htm

It is difficult to be calm with what you have going on.  Try to get plenty of rest as, you will need it.



More later.......take care,



Palace

[PamelaDV]

Palace - thank you!  I actually already have that page bookmarked.  It gives A LOT of information all in one place.

One of the things I haven't focused on is the hearing loss - mostly because I have ALWAYS had hearing loss in my left ear (the one being affected now).  I have had multiple surgeries on that ear trying to restore my hearing through prothesis middle ear bones (none of which have worked).  It's one of the reasons I have such a good relationship with my ENT already - I see him all the time for various things. I have sleep apnea, he's roto-routered my sinuses, he treats me for acid reflux, he's operated on my ear to help with chronic mastoiditis, etc...  So when I first started with these symptoms - at first I ignored them.  The land of denial is so very comfortable.  ;-)  It was my husband who was like "you know - you seem to be getting dizzy more and more - maybe  you should go see Dr. Mann about that."  Huh - maybe you're right.  In the wait to see him - my symptoms just got worse and worse and have been getting worse and worse ever since.  So in regards to hearing loss - it is worse - but I ignored that at first because that's not news to me.

Anyway - thank you again for your prompt response.  Do you mind if I ask how your diagnosis has gone?

Thanks,
Pam

[Palace]

Pam,


This all started for me back in June.  I was all "ready" like you.  I went from the medical clinic for my first hearing test, to the ENT, to the audiologist twice, ended up in emergency all night with A-shock from the steroids I was given, (ten day dose I only was able to take two days) then the MRI, then the consultation with the surgeon, then the consultation with the radiation doctor.  I even consulted a holistic doctor.  I spoke with my family doctor about all this just last Friday.  She can't understand why I won't go with the extreme surgery and I'm going with radiation at the end of the month and first of December.  I was at the local medical clinic numberous times with AN symptoms only to be sent home with larger doses of Imitrex for migraines and other symptoms which now appear to be AN related.  It is sad that I never got referred for an MRI before, my tumor got so large.

I don't want to bore the same people on the forum with the same story again so, I can write privately.  I was just logging off when I saw your response come in.  I have a migraine coming on so, I have to close for tonight.

Where is it you live?  I'm in northern California.  My computer glasses are missing at the moment.  This might be a big mess.  I appologize if it is text-foggy.



Take care,



Palace

[Obita]

Hello Pamela:

Welcome.  Did they do your MRI with contrast dye?  If they did not, the AN would not show up very well if at all.  The tech would have come in half way through your MRI and given you an injection in your arm.

If it is not an AN, I would have no idea what your symptoms suggest but seeing a Otologist/Neurotologist could give you some answers.  They specialize in inner ear disorders.

Good luck and if you have any questions, feel free to email me anytime.

Kathy

[Sue]

Hi

Welcome to the Forum.  Boy, it sure sounds like you have an AN.  I had fullness in the ear, tinnitus, hearing loss, and a taste in my mouth...but didn't get an MRI until almost a year later, when I finally developed numbness.  I was being treated for allergies.  Anyway.....I had my MRI on a Thursday and my doctor called me Monday morning. This was a neurlogist by this time, not the ENT (who said, and I quote "Well, I don't know what it is then...").  It also sounds like you've had waaayy to much stuff done to you...and I'm sorry that you are going to have more stuff done by the sounds of it.  Hang in there, kiddo....this is a good place to vent. 

Sue in Vancouver

[Emily Murphy]

I know you're anxious to get your test results, but remember that these tumors are very slow growing.  I do agree 10 days is a long time to wait, though.  There are other things that can cause hearing loss and vertigo.  One is Meniere's disease. A good web site to visit is http://www.vestibular.org/vestibular-disorders/causes-of-dizziness/dizziness-caused-by-vestibular-disorders.php  which is the Vestibular Disorders Assoc.  Baylor College of Medicine Otorhinolaryngology Department also has good information in this area.  Good luck!  I've had a small acoustic removed 4 years ago and am doing fine.  I can climb climbing walls, sail my catamaran, do whatever.  I only have a slight problem in theaters that have lights along the edges of the stairs.   Emily