Recently Diagnosed AN Seeing Neurosurgeon on Friday and ENT Next Week

[Brad1230]

Hello,
I was hoping someone out there could help me with some advice for my first appointments post my diagnosis. I first experienced symptoms of AN about 1 year ago. It started with Tinnitus and hearing loss (especially with background noise present). I have been trying to get answers since that time as to why this was happening...I was told by one doctor that it was simply high frequency hearing loss. In April I noticed my hearing was getting really poor and i was starting to experience some numbness on the left side of my face. I was also experiencing balance issues and dizziness. I decided to see another Doctor who ordered an MRI.  Within a week I was told that I likely had an Acoustic Neuroma this is the quote from the MRI diagnosis.

" An enhancing legion is seen in the left internal auditory canal extending from the cerebellopontine angle. It demonstrates homogeneous enhancement. It has a morphology reminiscent of an "ice cream come". It measures 1.9 cm TR by 1.2 cm AP by 1.0 cm CC. The ventricles, sulci and cisterns are normal. The visualized orbits and paranasal sinuses are normal in appearance. Homogeneously enhancing left internal auditory/cerebellopontine angle lesion, given the morphology, is most compatible with an acoustic neurom. Meningioma is also in the differential considerations".

I am 37 years old. I have had 2 hearing tests 6 months apart. In February my hearing was deemed normal in the left ear. Last week my hearing was at 60%. 

I am worried that at this rate of hearing loss I will not be able to hear out of my left ear by next year.

I am looking for any advice I can get going into my appointments with specialists this week and next. I see the neurosurgeon on Friday and the Ear Nose and Throat Dr next Tuesday.

Also any interpretations of the MRI diagnosis would be helpful.

I really appreciate the opportunity to participate in this forum and one day help others with questions in the early stages of their diagnosis.
Thanks
Brad

[opp2]

Hello Brad,

Sorry to hear (pun intended) about your possible AN. There is a lot of good information on this forum, just keep looking. When you get overwhelmed, stop, rest a while and come back later. There is a section at the top of the page, from ANA with a forum for helpful tips. There is also lots of info in the AN Issues with a list of those who are willing to talk to you on the phone. There are users on the forum from all over North America, with the majority of course from the US.

There is also a list of questions to take with you to the Doctors offices. We all recommend taking paper and pen with you to write down your questions and answers. I also took another person with me most of the time.

In regard to losing your hearing, unfortunately more often than not, we lose our hearing on the AN side. There are quite a few on here that have retained their hearing, however I believe their AN were smaller than yours is. I wish you all the best in this journey. Come back often.

Nikki

[Rivergirl]

The neuro surgeon will undoubtedly suggest surgery because that is what they do, they will try to save the hearing but as Nikki said quite a few of us loose the AN side hearing (which is not the end of the world).  I lost my hearing on the right but think I am better off without it, noises are not so muffled, I just don't know where the noise comes from.  The ENT may suggest waiting six months to see how it grows but maybe not.  I just wouldn't rush into (these tumors generally grow slow), weigh your options, get a radiology consult as well and send your stuff to House Ear in California for a free second opinion.  Best of luck with your journey.

[CHD63]

Brad .....

The new friends you have on this forum know the terribly frightening feeling to come over you when you learn you have an acoustic neuroma.

If you have not already done so, please send for the free informational materials from the ANA.  See:  http://www.anausa.org/index.php/contact-us/free-ana-information-packet   Also check out the list of doctors, etc. on the home page.  Learn all you can.  Then choose your physician very carefully.  You want a doctor with vast experience in treating specifically acoustic neuromas (even if it turns out to be a meningioma).

Ask any questions you have here and someone will tell you about his/her experience.

Many prayers.

Clarice