Author Topic: Newby  (Read 1812 times)

Moselle

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Newby
« on: April 28, 2022, 09:17:04 pm »
Hello.  MRI says I have a mass  16mm x 9mm.  Most likely a vestibular Schwannoma.  I noticed sudden hearing loss in my left ear in early June 2021. Sought help but got nowhere.  When I moved recently I tried again and after a lot of pushing and refusing to believe the bs of a virus killed my hearing and refusal for yet more Flonase stuff I got a hearing test and an MRI.  Now I distrust doctors so not in any hurry to talk to more but I have too.  My only symptom is the left ear loss of hearing and the feeling like something is plugged up in it. Fortunately my right ear has compensated for the left by having hyper acoustic abilities.  Seriously!  Waiting for a call back from one medical place but I heard covid has caused a backup so I may be waiting some more.  But I’m okay with that.  Maybe will call a couple others.  Thanks for reading.  I guess I’m wondering if anyone else wants to wait and will their  mass to shrink on its own. 


 with that. 

donjehle

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Re: Newby
« Reply #1 on: May 01, 2022, 04:51:24 pm »
Welcome, Moselle, to the ANA forums, and thank you for making your first post!!!

Like you, I was told for the longest time by my ENT that a virus caused my sudden hearing loss until he got the MRI back, and even then he said it was a good thing I had that virus because it caused me to have an MRI which shows a vestibular schwannoma.  He never even considered that my hearing loss was from the VS, not a virus.  He kept ordering prescriptions for virus medications which did nothing for me.  But I had most of the vestibular schwannoma symptoms.  I soon realized that I needed to listen to doctors who knew what they were talking about.  And that is why I found the ANA so valuable.  I probably watched 30 hours of videos in my first month after diagnosis.

Make sure, Moselle, that the doctors you consult with are experienced with vestibular schwannomas (more commonly called, acoustic neuromas).  Don't go to someone who only treats one or two a year.  Make sure you contact the ones who treat them all the time.  They are the ones with the most experience, and they know what they are talking about.  Some will even give free Zoom consultations.  The Forums can give recommendations on who might be good in your area.

Thanks again for your first post, and please stay in touch as we want to support you in your journey!
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.

Moselle

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Re: Newby
« Reply #2 on: May 02, 2022, 10:30:53 pm »
Thank you for your reply and understanding.  Can you tell me what WSR stands for?  Sorry about what is happening with your acoustic neuroma in causing your symptoms. 

Greece Lover

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Re: Newby
« Reply #3 on: May 03, 2022, 11:41:41 am »
Yes, doctors will be necessary and hopefully you can find one that is thorough, experienced, and helpful.

I think Donjehle's WSR should maybe be WRS: "Word Recognition Score," which is what percentage of words you can recognize in an official test from and audiologist?  But I'm not totally sure. 

Good luck!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

donjehle

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Re: Newby
« Reply #4 on: May 03, 2022, 06:57:28 pm »
Oops!  I didn't even notice that it was wrong.  I will fix my Word Recognition Score!
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.

Greece Lover

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Re: Newby
« Reply #5 on: May 04, 2022, 07:55:56 am »
I'm watching you like a hawk, donjehle. :-)
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

donjehle

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Re: Newby
« Reply #6 on: May 04, 2022, 07:08:12 pm »
HaHa!   :D 
Let me know if you spot anything else I messed up on!  I appreciate you!!!
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.

gbly

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Re: Newby
« Reply #7 on: June 24, 2022, 01:15:06 pm »
Moselle,
Welcome and you are in the right place.  Keep reading other journeys.  I had a sudden loss of hearing in my left ear, "ear wax" may a@#$#$.
Anyway, I think the challenge is there are not many of us until now.  I think the technology is helping us discover early and that is our advantage.  We can kill it or remove it. 

I think every answer is watch and wait for the first year....up to 10.  I had a rapid growth and in hind sight, I would have asked to radiate immediately.  I want that think dead early.  radiation has a 96% success rate with little side effects.  I have had some facial issues so surgery would have been worse I am guessing.

But to make a long post longer, read the many journeys, ask questions and keep us posted on what you decide.  We are here to support.
GB

Moselle

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Re: Newby
« Reply #8 on: September 17, 2022, 10:29:36 pm »
I’m still watching and waiting.  I started working part time  last month and been stressful learning and adjusting to the new job.  I’m wondering why I get brain fog.  Is it the tumor or is it the stress?  Other than that no new symptoms except tiredness off and on.  Next month will be the 6 month mark to get the first follow up MRI.  I’m thinking that is a cause of anxiety wondering if it’s growing.  Getting used to the hearing loss in left ear.  I don’t think it is a problem at work at all.  I believe an exercise routine would be beneficial but just haven’t been on it except walking the dog. 

drumfest

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Re: Newby
« Reply #9 on: September 19, 2022, 12:48:48 pm »
Moselle,  I, like you, learned of my tumor in April of 2022.  I have your symptoms as well so I know how you feel and I'll be going in for my 6 mo MRI in Oct too.

Don Jehle is correct.  Please get in touch and stay with the experts that handle this tumor daily.  Everything in his post I concur with.  Order the information booklets from the ANA or download them and watch the videos on their site.  All are extremely informative!

Good luck with your journey and please keep posting updates.  I sure will.

d
Diagnosed 4/2022 L sided AN 1.2cm.  stuffiness/clogged sensation w/slight hearing loss but good WRS.  Occupation: Professional musician.  No treatment yet

Dlip246

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Re: Newby
« Reply #10 on: September 20, 2022, 06:36:14 am »
Thak you for sharing.  Keep a good eye on it.  I chose to watch closely and do CK (mine was slowly growing).  I didn't have the brain fog until after the CK.  Taking ginger supplements helps with the fog, or at least it helps me.  Hang in there!
1.4 x .83 x 6 cm (14 x 8.3 x 6 mm).  watched slowly grow for 2 years then CK January 2022.  3 months post CK hazy head, 6 months post CK now having hemifacial spams same side.

 


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