Author Topic: I'm new here, Hello!!!  (Read 322 times)

AmySurplus

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I'm new here, Hello!!!
« on: November 24, 2022, 09:31:16 am »
Hi everyone!

Could I ask for some advice?

I've been on W & W since 2016 with a small AN ~ 3.5 mm (Meep is it's name!)

Minimum growth over the last few MRI's.

Symptoms have been worsening all the time, but because of Covid, couldn't see Neurologist about them.

I had another MRI 6 weeks ago and now my Neurosurgeon wants to see me.

I'm a bit worried in case  it's has grown.

I have read that more than 2mm growth might be an indication for active treatment.

Could I ask you all for some advice and reassurance??

Thanks in advance,
AmySurplus

Greece Lover

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Re: I'm new here, Hello!!!
« Reply #1 on: November 28, 2022, 03:41:51 pm »
I can understand your anxiety!  Not sure what advice can be given until you know what the doctor has to say. 

I salute "meep" as a great name, however!
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.

AmySurplus

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Re: I'm new here, Hello!!!
« Reply #2 on: November 29, 2022, 08:07:10 am »
Thanks for replying!

I just wanted to feel like I belonged somewhere with folk who understand.

Worrying in advance never did any good, but I can't help it sometimes X

drumfest

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Re: I'm new here, Hello!!!
« Reply #3 on: November 29, 2022, 05:43:25 pm »
You belong & we definitely understand.  Please wait until the doctor tells you the news.  I know it's hard with anxiety as I've been there too.

Check out the handbooks from the AN if you haven't.  I found the Newly Diagnosed & Cognitive books extremely well written. (I downloaded and have hard copies of both)  They helped me a great deal in understanding all of the complexities of this disease and I hope you find them useful too.

Great luck in your journey and again, you're not alone and we very much understand!!!

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

AmySurplus

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Re: I'm new here, Hello!!!
« Reply #4 on: November 30, 2022, 03:51:44 am »
Thanks, Drumfest!

Aha...are you a drummer by any chance?

I've been drumming for years, so maybe that's what triggered mine...

Hoping everything's OK with you, I'll find out what's happening with 'Meep' and I'll be back

drumfest

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Re: I'm new here, Hello!!!
« Reply #5 on: December 02, 2022, 05:25:52 pm »
AmySurplus,  Yes, I am a drummer.  At the beginning I thought loud noises were thought to be triggers, but it's controversial and that's exactly what the Mayo doctors told me on a recent virtual appointment as well.  Obviously, all of us would like to know what is/was the trigger for creation & growth.  Frankly, I want to know what stops it from growing and I'm not finding any concrete information on this.  If someone knows factually what stops this tumors growth, please share. (not talking about surgery or radiosurgery)  I'm sure that information would be wanted by everyone impacted.

Overall, doing decent at this point in my watch and wait status.

Take Care!!  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

donjehle

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Re: I'm new here, Hello!!!
« Reply #6 on: December 03, 2022, 04:15:35 pm »
Hi AmySurplus!

Thanks for joining the ANA forums and posting!

First, I want to state that I'm not a physician, and there is no way that I could possibly diagnose your situation or give you any medical advice.

But, with that said, please do not become too anxious over the neurosurgeon wanting to see you.  It could be that your acoustic neuroma has grown some (although they typically do not grow very fast and yours hasn't grown much in recent years).  Or, it could be that your neurosurgeon is concerned about your worsening symptoms.  I would certainly hope that your neurosurgeon would want to see you if he/she learned that your symptoms have become worse.  That should be a concern for them, even if your tumor has not grown any at all.

You asked for reassurance, and my guess would be that your doctor is just concerned about your symptoms getting worse and wants to talk with you about what you could do for your symptoms.  But again, that is a total guess on my part.

Please let us know when you find out more!

Best 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.

AmySurplus

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Re: I'm new here, Hello!!!
« Reply #7 on: December 04, 2022, 03:02:20 am »
Thanks for you replies.

Hi drumfest! ,
Yes, it would be wonderful to find something that stopped growth!
It's not just musicians that get these things, so probably not caused by my playing!
Keep well and rock on!

Hi donjehle!,
Thanks for your reassurance, I see you also have a very small AN.
Yes my symptoms are getting worse, hearing is fading, excruciating tinnitus and 'tilty' head.
Still grateful to be on W & W though as from what I've read so far, nothing will get my hearing back or get rid of the tinnitus.
I'm doing vestibular therapy and balance is getting better.

Good wishes to you both!
AmySurplus

 


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