Recent Posts

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Post-Treatment / Re: A/N has Grown a lot after CK 2 yrs ago
« Last post by mwatto on Today at 01:04:39 am »
Hi Paul so glad to hear all is well!

 I will always be grateful for your kindness to me 5 years ago when I was diagnosed and was so traumatised. My CK response is also going fine as is hearing and balance.
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AN Community / Re: Is anyone up for making a Discord?
« Last post by donjehle on July 26, 2024, 05:48:28 pm »
Hi StarryNights123!

What did you ever decide about starting a Discord? I didn't see any response.

And I don't know about any rules the ANA would have.  One of the moderators would have to speak to that.

But, if you start one, please post it here so that anyone who wants to join it would know where to go.

Thanks so much for thinking out of the box!
Don
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AN Issues / Re: Side affect following CK
« Last post by donjehle on July 26, 2024, 05:40:24 pm »
Hi Marty84, and thank you for posting your experience here on the ANA Forums.  You may be surprised at the number of people who will read your post (though most will not respond).

My Vestibular Therapist would do periodic testing on my progress.  I had to learn not to base my progress on my feelings.  Sometimes I felt like I was not making any progress, sometimes I felt I might be doing a little better, and sometimes I felt like I was doing worse.  And all of that might have been true because our progress is rarely in a straight line.  We might have good days and have bad days.

But I learned to leave the results of my progress with my vestibular therapist.  The first day I saw her, I fell several times (fortunately, I had a safety harness on).  The last time I saw her, and she tested me, she told me that my balance was actually better than most people my age.  I had improved immensely.  However, I did not always feel like I was progressing.

So, I just want to encourage you to continue.  I will be interested on seeing your post in another few months of how you are doing with your balance.

Best wishes with your therapy!
Don
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Post-Treatment / Re: A lot of mucus in the nasopharynx, severe chronic rhinitis after surgery
« Last post by donjehle on July 26, 2024, 05:31:23 pm »
Hi Neobinadya,

And thanks for posting on the ANA Forums!

When I read your post, I felt awful for what you are going through.

My wife (who does not have an acoustic neuroma) suffers from an excess amount of mucus -- although not nearly as badly as what you are experiencing.  She has also been to many ENTs, specialists, allergists, and other doctors.  She has tried many treatments, medications, and natural remedies, but none of them have worked so far.

Unfortunately, I do not have a cure to share with you.  But I can understand a little bit of what you must be going through, and it is terrible!  I am so sorry that you are having to experience this.

I wish you the best on your journey, and if you discover a cure, please post it here!

Thanks,
Don
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For those in the 'watch and wait' status / Re: Growth after 10 years
« Last post by DanFouratt on July 25, 2024, 05:08:49 pm »
Just checking in, do you have a date and location?

Dan
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AN Issues / Re: Taste and Smell, frick and frack!
« Last post by MarlaB on July 25, 2024, 04:05:21 pm »
I'm wondering if anyone is still following this thread..and I'm curious if any of you have symptoms of Phantosmia, as I do?

I seem to be the only one in my immediate vicinity who on occasion, smells smoke, gas, cat pee, lilacs, or lavender.

Brain Tumor?? (or overdoing vitamins and minerals??)

Just me?

Marla B
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AN Issues / Side affect following CK
« Last post by Marty84 on July 25, 2024, 12:36:55 pm »
I am a 84 year old male who had CK radiation 21/2 years ago for an acoustic Neuroma.  follow up MRI's indicate Tumor is shrinking.  However my balance has worsened and I feel very fatigued every day.  This has also caused depresion.  During the past few years I also suffered a few mini strokes and one regular stroke I have taken a few programs to deal with the balance issues.  In each case I dropped the programs because they made me feel worse.  However I read on this site that feeling worse is not unusual.  About a month ago I joined a Vestibular Therapy session and go twice a week.....I don't feel any better but I will stick with the program in hopes it will help.  Would welcome any comments from others who have experienced similar affect's.

Marty
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For those in the 'watch and wait' status / Re: Growth after 10 years
« Last post by DodgeAU on July 25, 2024, 03:41:02 am »
Good to hear you made a decision, MikeRad. I had GK myself 2 1/2 years ago and doing very well. Prior to GK, I lost my hearing on the AN side so there was nothing to lose anymore. I also had a small dose of radiation to the cochlea. My only issue post GK was facial hemispasm after 6 months and lasted for about 9 months before it disappeared. I also have mild tinnitus but I barely notice it now. Keep us posted with your treatment and recovery we want to hear how did you go.
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Hearing Issues / Re: Bose hearphones availability
« Last post by DodgeAU on July 25, 2024, 03:23:53 am »
I googled the Bose hearphone and yeah they look clunky. I'm now SSD and would like to know what are you guys using right now? Though over the last 3 years I have adapted already without using any but thought just to give a try something if it will make a difference.
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Hearing Issues / Re: Bose hearphones availability
« Last post by skipg on July 23, 2024, 11:16:26 am »
I still use the hear phones by Bose. They work better than my cross hearing aids. Through the app I am able to transfer all sound from deaf ear to hearing ear along with bass, treble, and volume. If you can find a refurbished I would definitely give them a try. The negative is, they are clunky and wearing them, people assume you are listening to music instead of them.
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