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Author Topic: update on 23-year-old son  (Read 4507 times)

km5

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update on 23-year-old son
« on: August 11, 2015, 03:01:09 pm »
Hello everyone,
Son with neuroma is now 30 and has been watching and waiting for seven years.  After two years of no growth he stopped getting MRIs.  Today's issue:  His neuroma side started ringing last night and today he's lost a lot of hearing in his AN ear and it feels "stuffed".  So of course he's looking for a doctor ASAP and worrying....
From my reading, ANs grow very slowly and one doesn't lose hearing all of a sudden.  He is not dizzy.  I'm hoping he just has an ear infection.  Is this just a mother's optimism?
You all have been so helpful in the past. 
Thanks,
kitkit
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mcrue

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Re: update on 23-year-old son
« Reply #1 on: August 11, 2015, 04:23:28 pm »
Hopefully it is just a scare and steroids may help him out; however, as you know, people on "Watch & Wait" must have MRI's at least every other year for the rest of their life.

Best wishes.
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5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

sunny

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Re: update on 23-year-old son
« Reply #2 on: August 11, 2015, 08:37:47 pm »
Hi kitkit,

I'm sorry to hear your son is experiencing some symptoms. Of course he should see a doctor, get an MRI, and have it checked out...but I will tell you (although not to worry you) that my AN symptoms did show up overnight, at least the tinnitus and "fullness" did. I woke up feeling like there was water stuck in my ear after the shower, but it didn't go away. I suspect my slight hearing loss might have been gradual, but I finally noticed it that morning, too.

So although ANs grow slowly, I guess for some people (me) there is just a "tipping point" for some symptoms?
But like mcrue said, I hope it's a simple scare and steroids will right it.

All the best to you.

sunny
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Right side A.N.  (11 x 9 x 5)
Symptoms -- 2/18/15 sudden partial hearing loss and constant tinnitus
Diagnosed -- 4/24/15 by my ENT with MRI
Treatment -- 6/17/15 first of three CK treatments @ Stanford with Drs. Chang and Hancock
Treatment Completed! -- 6/19/19

GaryWNT

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  • Ready for 1st MRI post CK . . .
Re: update on 23-year-old son
« Reply #3 on: August 11, 2015, 09:14:33 pm »
KM5,
My AN first showed up as fullness in the ear, slight hearing loss at some frequencies. After about 6 months of that, I had sudden hearing loss in the AN ear. Steroid IVs brought the hearing back . . . but in following up with an MRI, my AN was diagnosed. By that time it was about 2.5cm . . . so on the medium/large size. Now planning surgery. I hope things go well for your son!
Gary
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Sudden hearing loss in left ear 02/15
MRI 07/15 showed 2.5cm AN
CK at Stanford (3 days) 11/16
No change in symptoms (Mild tinnitus, mild balance issues, moderate hearing loss)
1st follow up MRI coming 04/16
some evidence of central necrosis on the treated left acoustic neuroma 05/10/2016

km5

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Re: update on 23-year-old son - good news
« Reply #4 on: August 13, 2015, 08:52:38 am »
Ear infection!!! A great relief.  Crazy how ear stuffiness and hearing loss and tinnitus takes our minds immediately to the AN when it is equally likely that an ear infection caused the symptoms.  Sudafed and Flonase and he's feeling much better.
Thanks for your thoughts.  It turns out it's 2 1/2 yrs since last MRI and he is scheduling it.
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Sheryl

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Re: update on 23-year-old son
« Reply #5 on: August 16, 2015, 02:20:38 pm »
Great News!!  Oh how our minds run to worst case scenerios.  Glad he will get an MRI too.
Sheryl
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9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

sunny

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Re: update on 23-year-old son
« Reply #6 on: August 17, 2015, 09:55:35 pm »
Wonderful news, km5!
I'm so very glad for all of you.

Take care,
sunny
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Right side A.N.  (11 x 9 x 5)
Symptoms -- 2/18/15 sudden partial hearing loss and constant tinnitus
Diagnosed -- 4/24/15 by my ENT with MRI
Treatment -- 6/17/15 first of three CK treatments @ Stanford with Drs. Chang and Hancock
Treatment Completed! -- 6/19/19
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