Author Topic: New to this Forum  (Read 1101 times)

JohannaZ

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New to this Forum
« on: September 24, 2023, 01:01:10 pm »
Hello,
New to this community and already grateful. I was diagnosed 18 months ago as I lost hearing in my left ear (completely) and did not want to see a doctor for a couple of years (COVID fear).  My symptoms other than complete hearing loss, are tinnitus, balance issues, constant headaches (dull not painful), and occasional vertigo lasting for a couple of hours.  AN is small so doctors recommend observation yet I am still stuck with these symptoms which won't get better. My main issue is trying to work as being behind the computer contributes to headaches.  Also, I don't want to burden my husband/ teenage sons (3) with these issues so they pretty much think all is well and normal and they don't understand how it impacts me (or they forget).  Any suggestions on how to navigate symptoms and personal relationships?  This is my only support group which I just discovered. Thanks in advance!

donjehle

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Re: New to this Forum
« Reply #1 on: September 30, 2023, 03:18:07 pm »
Hi JohannaZ, and welcome to the ANA Forums!  I'm glad you found us!

Like you, I have a small acoustic neuroma and have almost completely lost my hearing in my AN ear, and I also have constant tinnitus, and have suffered from balance issues.  Unlike you, however, I have not had the headache issues.

I did seek a vestibular therapist to help me with my balance issues, and that has almost completely done away with my vertigo and balance problems.  Every once in a while I have a brief balance issue, but then I remember my therapy and do a few exercises, and it goes away.  I highly recommend seeing a vestibular therapist (and not merely a regular physical therapist).

In terms of family, I recommend getting the materials the ANA offers and even having your family members watch a couple of the ANA videos with you.  While you do not want to burden your family, giving them some exposure to what others with acoustic neuromas have had to go through may help them to be more supportive of you in the future.  I am sure they just do not understand.  And the ANA offers some of the best educational material you can find.

In terms of your headaches, while I have not experienced them, having headaches is not uncommon.  I think I remember seeing an ANA video addressing headaches and acoustic neuromas.

Best of wishes on your journey!
Don
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.

DanFouratt

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Re: New to this Forum
« Reply #2 on: October 02, 2023, 01:35:20 pm »
JohannaZ,

The other thing I did with my wife is attend local meetings to interact with others going through this journey.  Many of the AN Warriors who attended were with their spouse. Not sure where you are located but the AN website has a list of local chapters.

Good Luck

Dan
Dan Fouratt             63 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23             TBD Not Scheduled

Feroz

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Re: New to this Forum
« Reply #3 on: October 02, 2023, 01:47:08 pm »
Hello

Sorry to hear about your diagnosis and I hope all goes well for you.

I was diagnosed with a vesitibular schwanoma on my right inferior vestibular nerve which measures less than 2mm, apparently I have had this since 2013 and I am now 33 so that means 10 years and it hasn’t grown since. I do have regular MRI scans due to my Von hippel lindau condition (haemangioblastomas in brain and spine). I was wondering could I be having NF2? What’s the likelihood of this? I do not have any other lesions relation schwanomma or NF2 lesions it is just this right vesitibular nerve lesion.

Where are yours located?

Thank you!