Author Topic: Another new guy...  (Read 42697 times)

waypoint

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Re: Another new guy...
« Reply #60 on: January 15, 2020, 02:51:42 pm »
2Cool  ;)  Wishing you the best.  Tinnitus never goes away. Ever.
I was doing these MRI every 6 months, and then 1/yr. I think it was 5-7 yrs before was cleared my Dr. to not come back.

2.4cm AN removed, Retrosigmoid, 10/1/07
Memorial Hermann, Dr. Chang & Dr. Alp
lost hearing Lt side, paralysis Lt side hopefully temporary
recovered from the balance issues at about 4-6months

dwilliams35

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Re: Another new guy...
« Reply #61 on: October 12, 2020, 02:24:44 pm »
Another 9 months in..  The "Full" feeling went away,  either no real balance issues anymore, or I just got used to it enough where I don't notice.   Hearing seems to be fairly stable, at whatever degraded level you want to call it.  The COVID is presenting real problems, of course, I had no idea how much I was relying on lipreading to "fill in" what I was actually hearing, until the world started wearing masks..  Very frustrating.

Tinnitus is still there, of course.  I've become accustomed to it now, and don't know if I could sleep without it... ;D .   Insurance has me due for a new set of hearing aids in a month or two, and the've gotten better with each and every new generation, so here's hoping..

I still haven't developed any superpowers.  I was told there would be superpowers once my head got irradiated, I'm feeling cheated.  I was holding out for flying or possibly telekinesis, but I'll settle for simple x-ray vision at this point..
Diagnosed 2-2017,  GK 10-2017.

dwilliams35

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Re: Another new guy...
« Reply #62 on: October 25, 2021, 04:04:31 pm »
Another year into the books....  MRI shows not much shrinkage, but still stable.  Neurosurgeon says that it's probably where it's going to be for the long haul, but he's good with it.  Maybe some very minor balance problems, but that may be just as much just getting older and my ankles being all goofy as it is the AN and GK:  for what it's worth, that's very manageable and hasn't caused me to faceplant in the sidewalk or anything...  Tinnitus is still there, but it's just a hiss now, and Herb Alpert hasn't made a comeback tour.

Latest hearing aids kinda suck (phonak) so if I've got any worsening hearing issues I'm sure I'll end up just writing them off to those..

Still no superpowers.

Neurosurgeon says another MRI in 2 years, then if everything's good he's going to cut me loose.  I'll have to come up with something else to always meet my deductible with every year..
Diagnosed 2-2017,  GK 10-2017.

bfoley

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Re: Another new guy...
« Reply #63 on: October 26, 2021, 05:23:59 am »
Sorry about the phonak aids - I am SSD and have the starkey CROS system.  The HID (hearing instrument dispenser) used a method called real ear measurements, and in some settings I can actually get a hint of directionality (has to be in a quieter setting).  They aren't cheap.  I love to pair with my phone for calls and driving directions.  Goes right in my working ear!

It frustrates me that they are going to allow these cheap new "hearing aids" in most states that are nothing but an amplifier that does nothing for loss at specific pitches.  Maybe your next set will be better?

dwilliams35

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Re: Another new guy...
« Reply #64 on: October 27, 2021, 06:08:19 am »
Sorry about the phonak aids - I am SSD and have the starkey CROS system.  The HID (hearing instrument dispenser) used a method called real ear measurements, and in some settings I can actually get a hint of directionality (has to be in a quieter setting).  They aren't cheap.  I love to pair with my phone for calls and driving directions.  Goes right in my working ear!

It frustrates me that they are going to allow these cheap new "hearing aids" in most states that are nothing but an amplifier that does nothing for loss at specific pitches.  Maybe your next set will be better?
  well, this is my fourth set, i had HA’s before my AN showed it’s smiling face..started with siemens, have had resound and widex before these, the siemens had real firmware issues and didn’t last long.   if i was forced to pick, i’d say the Widex were the best..  This is just the latest version they gave me, and i’m not impressed.   
Diagnosed 2-2017,  GK 10-2017.

dwilliams35

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Re: Another new guy...
« Reply #65 on: October 06, 2023, 02:09:38 pm »
Two year checkup,  everything good.  MRI shows a minor shrinkage of the AN, balance still good, hearing still sucks, no superpower development as of yet.   Still have minor ringing tinnitus, but it's becomes so ubiquitous that I don't even notice it unless I happen to think about it being there.

I have lost 75 pounds since the last time around (intentionally, not really related to the AN) so that may have improved balance, etc..

The worst thing is that he told me last time that if I was good after the last two years he'd cut me loose, now he added another 3 year checkup to it..  Oh well, no big deal, at least that will coincide with the year that my insurance will spring for a new set of hearing aids,  no doubling up the deductible to do that and an MRI.  If he does that again next visit, I'll go ahead and hit him with "now wait just a danged minute....."
« Last Edit: October 06, 2023, 02:24:21 pm by dwilliams35 »
Diagnosed 2-2017,  GK 10-2017.

donjehle

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Re: Another new guy...
« Reply #66 on: October 15, 2023, 10:58:48 am »
Thanks for the great update!
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

waypoint

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Re: Another new guy...
« Reply #67 on: October 25, 2023, 06:12:32 pm »
dwilliams35,

glad to see a fellow ANer and Dosfrios brother come back from time to time an provide an update. Life is good.  Life goes on and albeit alittle bit different for us. It's what we make of it. Take care of youself.

Waypoint
2.4cm AN removed, Retrosigmoid, 10/1/07
Memorial Hermann, Dr. Chang & Dr. Alp
lost hearing Lt side, paralysis Lt side hopefully temporary
recovered from the balance issues at about 4-6months

greenamw

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Re: Another new guy...
« Reply #68 on: December 15, 2023, 11:31:27 am »
The "drunk test" is a trip, right? ENG tests might help them see how it's messing with your balance. Not just about the MRI confirmation.