Recent Posts

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Eye Issues / Re: Phantom sightings in peripheral vision
« Last post by lilith on September 17, 2018, 09:13:30 pm »
Yes, me too.
Hearing Issues / Re: Clonazepam and Tinnitus
« Last post by kkc on September 17, 2018, 08:36:22 pm »
Have you found that it helps with tinnitus?
Hearing Issues / Phonak DECT and DECT II Cordless Phones
« Last post by arizonajack on September 17, 2018, 02:55:30 pm »
Many of you know from reading my posts that my adventure in AN land started in Dec 2011 with a substantial loss of hearing on the right side. In 2012 I was diagnosed with the AN and by then complete SSD. You can read about it in the link below if you haven't already read it.

Unfortunately, somewhere along the way I developed some age related hearing loss in my good ear (left) and the VA provided me with the CROS and Audeo set of hearing aids in 2012. Since then I have had upgrades in 2015 and 2018.

The story I want to tell today is about phones.

I bought a nice set of cordless desk phones in 2005. Good quality. Had a headset jack which I like because I prefer using a headset rather than holding the phone up to my ear. I had used a headset at work for many years.

Time marches on. The phones get old. My good ear gets old and I have trouble hearing people when I am talking on the phone with or without the headset and with the headset they have trouble hearing me.

Over the years I have numerous brands of phones only to have to return them. Very frustrating.

This year when I became eligible for my current upgrade I was checking out the current generation of Phoak CROS B and Audeo B I came across articles about Phonak's DECT and DECT II phones, manufactured to be compatible with Phonak hearing aids. The DECT II with the current generation (Venture series) Audeo B, DECT with the previous generation Audeo.

What this phone does is transmit your conversation directly to your hearing aid. That was wonderful, I thought, until I read that you have to hold the phone close to your ear, less than 10 inches to have the wireless transmission. You couldn't put it down on the desk or table while talking hands free, you'd lose the signal.

However, the phone can also be used like a regular phone, without your hearing aids, and with a headset though the headset jack is 3.5mm instead of the usual 2.5mm that you find on most phones.

This phone comes equipped with a magic button. If you have the volume turned up all the way and you still have trouble hearing the other person, push the green button on the side of the phone and the audio gets amped up like the phone was on steroids.

I was so impressed after I tried it I bought a second one (pre owned) on eBay for $40. New ones run $200 and up.

I won't bore you with details. If you are interested just google the product and you'll find manuals and specs, even product reviews.

This phone and a 3.5mm headset solve my issues with phone conversations.

Pre-Treatment Options / Re: "Second Opinion" - confusion
« Last post by catehiebert on September 17, 2018, 01:44:33 pm »
Thank you all for your input. 

I was able to call and get an appointment at Mayo in Rochester 9/21 to get their opinions given my surgical goal.  As expected, it's a small group of surgeons, so they all know each other.  Dr. Hines, who I'm working with at the U of M has done over 750 surgeries on AN's - both retro and trans...and Dr. Link at Mayo is highly recommended as well.

That said, even though this is scary, it's comforting to have Drs. that have this much experience :)

Post-Treatment / Small incision dehiscence
« Last post by Trinityfilled on September 17, 2018, 08:24:01 am »
I am 6 week’s post-op from my second surgery, translab. I’ve had one spot on my incision that does not want to close completely. It keeps oozing, then scabbing over, then oozing again. Well, yesterday I was advised to clean it with peroxide and it opened up and revealed a small dehiscence underneath. Anyone else experience this? What was treatment and result? Waiting to hear back from my doctors now.
Eye Issues / Re: Phantom sightings in peripheral vision
« Last post by 0010 on September 16, 2018, 08:26:49 pm »
Yes, I had optical illusions in my peripheral vision on the left side (same as my AN tumor) just prior and lasting about two years post-op. Also I had concurrent nystagmus. Also, phosphenes in dark rooms with my eyes shut.

Several of my optical illusions were very vivid and shocking. They have now stopped, by the way. They occurred in low light levels while looking to the left.

The most stunning was when I looked at a Christmas decoration hanging on the wall and saw instead Spiderman (Marvell Comics character). Yes indeed, that rattled me completely. The illusion was only momentary but unnerving.
Eye Issues / Re: Eyes pain
« Last post by jami on September 16, 2018, 04:57:23 pm »

Eye issues + facial sensations were my leading symptoms (i had assumed balance issues were due to aging). I saw the opthamologist in a parallel with the neurologist, as the eyes impacted my day to day the most. They found no issues.

I am about 5 weeks post surgery and scheduling a follow up with an ophthalmologist. The eye (surgery side) irritation grows. My family can tell when I am tired because my OTHER eye (the side I laid on for 10.5 hours during surgery) swells visibly -- although i am feeling the irritation on the surgery side. Appreciate all the insights from folks on the forum, thank you. Will continue to pursue this.
Balance Issues / Re: Who has regain good balance after surgery to remove AN?
« Last post by jami on September 16, 2018, 04:47:27 pm »

A follow up with a few details on my surgery (thanks for asking, notaclone13)

My AN, 2.7 x 2.2 x 2.1 cm, removed 8/12 at UNC Hospital Chapel Hill, NC. (Happens to be near where I live, making it much easier). Dr Ewend (Neurosurgeon) and Dr O’Connell (ENT Surgeon) used the tanslab approach. I did lost auditory and balance nerves on right side. They got ~98% of tumor after 10.5 hours of surgery.

Overall, this forum and the association have been incredibly helpful as I prepared for this and are already a big part of my healing process. I am being patient as I go, we all have good days and bad days, right?

Thanks all for the great support.

Hearing Issues / Clonazepam and Tinnitus
« Last post by notaclone13 on September 16, 2018, 08:27:35 am »
For those of you greatly bothered by tinnitus I came across this info on the tinnitus talk forum: Appears there was a clinical trial that showed clonazepam helps with tinnitus. In addition, because it is a vestibular suppressant, it also helps with dizziness and vertigo. Yes it is a benzodiazepine and yes it does cause dependence. But, if you need a drug to function, you need it. As my doctor told me, if you needed insulin to function, would you hesitate to take it?  The 0.5 mgs of clonazepam used for the clinical trial is a very low dose. I find 0.5 mgs daily helps with the dizziness and vertigo.
For those in the 'watch and wait' status / Re: Hello from a newbie
« Last post by notaclone13 on September 16, 2018, 07:45:54 am »
Hi K-Ditty,  there is a tinnitus website I found helpful called tinnitustalk.  An expert in tinnitus, Dr. Nagler, (himself a tinnitus sufferer) posted that some spices make his tinnitus worse:
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