Author Topic: Loss of hearing 4 years after middle fossa  (Read 5200 times)

miriamgail

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Loss of hearing 4 years after middle fossa
« on: April 12, 2015, 05:16:11 am »
Has middle fossa resection in December 2010 at House, came out with perfect hearing, and now woke up last week with profound deafness on the affected side, plus loud tinnitus. Doctors say this is almost unheard of, losing hearing over 4 years later. MRI negative for recurrence of acoustic. On prednisone now, undergoing intratympanic injections of steroids. Does not look promising to regain hearing. Now need advice on managing the deafness and the tinnitus. Thanks

rachelb

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Re: Loss of hearing 4 years after middle fossa
« Reply #1 on: May 16, 2015, 01:40:04 pm »
So sorry to hear this. Did you ever get this resolved?

miriamgail

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Re: Loss of hearing 4 years after middle fossa
« Reply #2 on: July 11, 2015, 08:49:59 pm »
Since my total left sided hearing loss in April, I completed 5 sets of  intratympanic decadron injections, and was tapered off Prednisone after one month of treatment. I have a regained some hearing, which the audiologists still call "no useable hearing," since I can not discriminate language on the affected side. The only noticeable change in hearing on that side is that  I can hear a distorted dial tone when I pick up the phone, whereas before I heard nothing when I picked up the phone.
I still have no directionality with sound, I can not tell where anyone is in my house by voice alone, and the "find my iphone" app by playing a sound does not work for me anymore.


The harder part is the tinnitus. It is not roaring jet sound like it was at the beginning of this event 2 months ago, but it is constant, sounds of wind, whistling, Pink Floyd instrumentals. There are all kinds of tinnitus apps I got on my ipad and iphone that play nature sounds to mask the tinnitus. This may seem negative, but all those did for me was make me dislike hearing the ocean. And for a girl from Miami, that is an adverse outcome. The tinnitus makes me tired.

If I am to be deaf on the left, why can't I at least have some quiet?  :)


And I still have the sequealae of my original surgery in 2010, the metallic tongue taste, and numbness of the left side of my scalp. These are meaningless, just irritants.

Sometimes I feel down about all of this. I thought I was out of the woods, how could I lose my hearing over 4 years later? My husband tells me that maybe the gift I got was hearing for 4 more years, and that's it. And the 4 extra years of hearing was important for my youngest, who is now 10, that is was invaluable to him to have a perfectly hearing mother for 10 years.

We joke about it, and sometimes I cry about it.

Echo

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Re: Loss of hearing 4 years after middle fossa
« Reply #3 on: July 11, 2015, 09:11:30 pm »
Miriamgail, I hope things improve for you.  I can well imagine your frustration at this point.  This forum is a great place to come for support.  We will laugh and cry with you! 

You might want to speak to an audiologist at some point and see if they can recommend something to help you hear better.  A Cros Hearing aid might be worth a try as it will pick up the sound from your AN side and transmit it to your good ear.  I use the Phonak Bi Cros and it made the word of difference for me.

Cathie

Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital

arizonajack

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Re: Loss of hearing 4 years after middle fossa
« Reply #4 on: July 11, 2015, 11:19:47 pm »
Hi Miriamgail, I also use the Phonak CROS system. My old equipment turned 3 years old recently and I was able to upgrade to the state-of-the-art CROS II.

Check out our ongoing discussion about the CROS II:

http://www.anausa.org/smf/index.php?topic=21818.msg979766475#msg979766475

3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

miriamgail

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Re: Loss of hearing 4 years after middle fossa
« Reply #5 on: July 12, 2015, 07:27:03 pm »
Thank you Echo and arizonajack. My next step is to look into these devices. I appreciate these references.

Miriam

NYLady

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Re: Loss of hearing 4 years after middle fossa
« Reply #6 on: July 13, 2015, 07:51:40 am »
Hello Miriam Gail....

Mine is another endorsement to Phonak Bicros.  I have been using the Audeo 70 with Bicros II for about three months, and they have literally changed my life!  I had lost a little more than half of my hearing prior to GK a year ago and within a few months of treatment, the rest of my word recognition was gone.  While I still hear some sounds in my AN ear, there is no word recognition (usable hearing).  Read about the Bicros here on this forum (with excellent info by Arizona Jack)  and did some research prior to going to Audiologist and sure enough, it was what he recommended as well.  I also have approximately 65% loss in the "good" ear.  Needless to say, I was in pretty poor shape hearing wise prior to these new devices.  I strongly recommend that you look into this option.  I feel like I am taking part in life again.  I wish the best for you

NYL

miriamgail

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Re: Loss of hearing 4 years after middle fossa
« Reply #7 on: July 13, 2015, 02:01:44 pm »
My audiologist and ENT are recommending the BAHA implant. How does that compare with the Phonak Cros?

NYLady

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Re: Loss of hearing 4 years after middle fossa
« Reply #8 on: July 13, 2015, 05:08:08 pm »
Hi Miriamgail,

While I cannot offer info on the implant, I can tell you I really love the Bicros.  Cochlear implant was mentioned to me, but I wanted to try a non-invasive solution first and I am very pleased.  However, there are many on this forum with BAHA who also love them.  The diagnosis of Acoustic Neuroma is a guarantee that many decisions will have to be made...this is one more my friend.  Best to you.

NYL

NYLady

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Re: Loss of hearing 4 years after middle fossa
« Reply #9 on: July 14, 2015, 07:38:54 am »
Hi Miriamgail,

Just thought of something....you could try the Phonak BiCros with a free trial period.  I am sure this will tell you what you need to know regarding how effective they can be for you or not, prior to committing to BAHA.  I had a 45 day no obligation trial period with mine....might be worth looking into for yourself.  Good luck.

NYL