Author Topic: Possible AN? Looking for feedback  (Read 520 times)

Klambert

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Possible AN? Looking for feedback
« on: February 05, 2021, 05:59:18 pm »
Hello!

I am from Wisconsin, mom of 2 small children, wife, and 34 years old. I feel that I have been suffering from symptoms of an AN for almost the past year. I didn't even know what an AN was until my husband brought it up to me after reading an article on ESPN about a NFL football players wife. He said "you have all these symptoms". My symptoms include:

*Tinnitus 24/7 high pitched all the time in left ear
*Difficulty hearing conversations in crowded areas or when the kids are playing, I can't make out the words my husband is saying, but I know he is talking--left side
*Imbalance, dizziness--not like vertigo
*Headache--pretty constant and dull ache most of the time but usually just on the left side
*Facial tingling on left side (from the corner of my left forehead to the corner of my mouth all the way to part of my ear lobe)--just the left side
*Had some limb spasms, not crazy but just left side, almost like twitches
*Fullness in ear left side
*Pressure around my head on left side

Here is the deal, I had FOUR audiograms in the last year and all were normal. The only thing abnormal was my tympanogram in left ear. Yet these symptoms persist and built in one another over the course of the last two months. In the beginning, I just felt the fullness in my ear and mild imbalance.

I do have an MRI with and without contrast scheduled for Monday Feb 8th at 7am. Has anyone ever had an acoustic neuroma with normal audiograms? I feel like this is driving me crazy.

Buffybeth

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Re: Possible AN? Looking for feedback
« Reply #1 on: March 05, 2021, 12:34:34 pm »
Hi Klambert, 

You may already know your diagnosis by now, but to answer your question, I had an AN on the left side with hearing mostly intact (92%).  I was told by my surgeons up in Boston that they were seeing this more and more -- and AN that grows not into the ear canal but towards the middle of the head.  In these cases, the hearing is not so affected.  I don't know if this is your situation, but it was mine.  I only lost my hearing *after* surgery.  Before hand, I had slight loss, but nothing notable.  I realized I had a problem only because of tingling on my face.

Good luck to you!  Jean
AN, 2 cm, left side
Retrosig, 4/2012, Brigham & Women's, Al-Mefty
   *lost hearing on left side during surgery
   *tumor slowly returned; face numbness
Gamma Knife, 11/2018, UPMC , Lundsford
    *Facial spasms 2 yr out; large cyst growth
Translab, 2/2021, UCSD, Schwarz/Friedman

Colorado Alex

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Re: Possible AN? Looking for feedback
« Reply #2 on: March 20, 2021, 08:27:57 am »
My audiogram was not "normal" but my hearing in my AN ear was pretty close to normal.  My AN is 2.1cm.   Not small.  So I'd say it is possible.

What did your MRI show?

Diagnosis 12/26/2019  2.1 x 1.9 x 1.4 cm left side AN, hearing 90%
Daily headaches.
Seeking multiple opinions.  Trying to keep it together until I have a plan.

dwilliams35

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Re: Possible AN? Looking for feedback
« Reply #3 on: April 08, 2021, 12:57:50 pm »
my original diagnosis came out of me going to an ENT when I just lost all hearing on that side.  A round of prednisone and that was fine, my audiograms were, if not normal, not any worse than they were previously.  By the time the whole course of treatment including the GK was done, I had lost some hearing, but early on that really wasn't an issue.
Diagnosed 2-2017,  GK 10-2017.

 


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