Author Topic: I have an inner ear Tumor  (Read 4459 times)

Leta7417

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I have an inner ear Tumor
« on: May 02, 2016, 09:21:23 am »
Please forgive me if this seems to be a dumb question.  To begin with I went to my doctor because of ringing in my ears.  He sent me to a hearing test and then to an ENT doctor who sent me to get a MRI test with contrast (I think that's what it's called). The ENT Doctor called me just a few hours after the MRI to say I had small tumor in the inner ear in a very delicate area.  Are all inner ear tumors AN?  And are all inner ear tumors all in delicate areas-my guess is yes.  When I google inner ear tumors this AN keeps popping up.  Also, when I went to see the ENT Doctor I mentioned I sometimes have difficulty swallowing.  I found one website that said difficulty swallowing is a symptom of AN but no other website says that.  My ENT Doctor did refer me to a neurologist 3 hours away from me who does specialize in AN.  Reading from others stories if I do have this AN then I am incredibly grateful for my ENT Doctor.
Please, any advice I will greatly appreciate.  I hope I have been able to articulate in words my questions and thoughts. 

caryawilson

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Re: I have an inner ear Tumor
« Reply #1 on: May 02, 2016, 10:42:34 am »
Tumor in inner ear are normally an AN, where the main criteria is growing out of the vestibular nerve. If it's in the inner ear, this should be a small tumor. When the tumor grows into the cranium, they are getting larger. When the tumor gets larger, >2.5cm'ish, it may start impacting the tongue and swallowing nerves. This was my case. So yes, it could affect your ability to swallow but this implies a larger tumor.

Sorry for your inclusion into this club.

As you know more, share details and we'll try to share our experiences.
4.5 cm, 17.5 hour modified retro surgery
John Hopkins: Lim / Carey
Complete Facial Paralysis
Facial Plastic Surgeon (amazing): Dr. Boahene

Leta7417

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Re: I have an inner ear Tumor
« Reply #2 on: May 02, 2016, 10:55:45 am »
Thank you so much for the reply.  As pathetic as it sounds I've been sitting here waiting for someone to reply.  Thanks for the info about the diffuclity swallowing.

I've got a feeling I will be on this forum very often now.  Neurologist appoint is in another two weeks-wish it would hurry up. 

Thanks again.

researcher

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Re: I have an inner ear Tumor
« Reply #3 on: May 02, 2016, 12:17:01 pm »
No dumb questions here.

You need to ask your doctor for your MRI report. Look for inner auditory canal as the location. My report used the words acoustic neurinoma. I remember thinking that this tumor was in my ear canal. Boy was I surprised when I realized it was essentially in the skull and brain area.

Suggestion: Write down your questions AND the answers. Because all this information will just overwhelm you. Take care.

mac84

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Re: I have an inner ear Tumor
« Reply #4 on: May 02, 2016, 01:32:34 pm »
You'll also see the term "Vestibular Schwannoma" - Same thing.
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As my Dr puts it - when it's there in that location that's really about the only thing it can be. And if you're going to have a tumor then a benign one is the one to have!  :)
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We were all feeling just like you when we were told. Do your research and you'll see that it can be scary, but it can be handled.
Diagnosed 10/13/14 with 1.4cm AN L side
1st Consult with Vanderbilt 11//14
W/W.  Next MRI in April 2015 at Vanderbilt.
April 2015 MRI no growth -
April 2016 MRI no growth - still 1.46cm.
4/17: No growth!
4/18: No growth! MRI 2 yrs
4/20: No growth! Symptoms stable- MRI 2 yrs

Leta7417

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Re: I have an inner ear Tumor
« Reply #5 on: May 03, 2016, 02:48:28 pm »
Thank you everyone!  I am so thankful for this "club".  I found another member who went to the same doctors I am going to and he had a very positive experience!  Neurologist office just called and said they had have an opening this Monday (8 days earlier than original appointment) in the morning and would I like to take it.  Yes, I would.