Author Topic: Newly diagnosed with symptoms  (Read 2084 times)

gringosid

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Newly diagnosed with symptoms
« on: April 05, 2022, 09:53:02 am »
Hello all!
This is my first look and first post. Thank You all for this forum!
The symptom that made me see an ENT is Right ear hearing distortion at certain frequencies. Test showed moderate to sever Right ear only, hearing loss. MRI showed a 5x5 tumor on the nerve. I saw a specialist in Albuquerque NM. After a lengthy discussion. He said, lets wait and watch, doing anything about it is too risky, and could make things worse, or have no improvement.. I actually was dissapointed. I thought the appointment was about chosing one or the other treatment. The symptom of the distortion is at time painful, where I have to immediately cover my ear. Certain frequencies, voices, restaurant sounds, are very uncomfortable. Anyone with similar symptoms? What happened as you watched and waited?
My wife read something about daily aspirin that can shrink the tumor.???
Thanks for any responses!

donjehle

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Re: Newly diagnosed with symptoms
« Reply #1 on: April 05, 2022, 05:14:48 pm »
Welcome, gringosid, to the Club and to our forums!  And thank you for making your first post.  These forums are where we can help each other by sharing our experiences which, while they may vary from person to person, are still very helpful to the ANA community.

When you said that your MRI showed a 5x5 tumor, I'm assuming that was in millimeters and not centimeters?  A 5mm acoustic neuroma (or vestibular schwannoma) would be small enough that many specialists would advise watching and waiting to see if it is going to grow any further.  If, in another six months, the next MRI shows significant growth, they would probably recommend treatment.  If it does not grow at all or grow very little, then they would probably recommend waiting since treatments all have potential risk.

I know what you mean about being disappointed and not being able to select a treatment.  My ENT doctor and my neurosurgeon at Emory in Atlanta both said I need to watch and wait.  I will be having my six month MRI next month to "see how much it has grown," as my neurosurgeon said.  I told him that I didn't want it to grow at all!

But there is another option if you don't like to wait (as I don't).  You can get a second opinion.  I did.  If you are in NM, there are a lot of AN experts out west, especially in California.  You might check the forums for recommendation on House or UCSD or other places out west with an excellent reputation.  Some of them will do a free video conference with you and give you their opinion.  If they are willing to treat your AN, then it might be worthwhile to travel there for the treatment, at least as far as your peace of mind goes.  If they, too, recommend waiting and watching, then at least you know there is a consensus among the experts.  Some on these forums have had multiple second opinions.  It's perfectly okay to do that.

It's interesting that you describe your tumor as 5x5.  Usually, acoustic neuromas have more of an ice-cream cone shape and are not perfectly round.  I'm not saying that yours is not that way.  It's just not as common.

As far as what your wife said about daily aspirin shrinking the tumor -- there was some hope that aspirin could be helpful for it, but my understanding is that the clinical trials with the aspirin ended up showing no benefit.  I think I read a post here in one of the forums which stated that.

In my case, while I was watching and waiting, I lost almost all hearing in my ear with the AN.  Now I wear a CROS hearing system so that I can hear from my left side (my bad side) in my right ear.  The distortion for me is mostly gone, but so is my hearing in my bad ear.

Again, thanks for posting and sharing your story!  Please post again and update us on how your journey is going.

Best wishes for your future!
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.

Greece Lover

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Re: Newly diagnosed with symptoms
« Reply #2 on: April 06, 2022, 07:56:40 am »
Donjehle is all over it with good advice here!
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.

gringosid

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Re: Newly diagnosed with symptoms
« Reply #3 on: April 09, 2022, 02:08:16 pm »
Thanks Don
Its actually 5x5x5 mm which is how they explained it to me. I work at a hospital that is part of the Mayo Clinic network. I will try to get a video conference for a second opinion. thanks again!

donjehle

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Re: Newly diagnosed with symptoms
« Reply #4 on: April 12, 2022, 03:49:54 pm »
I did a video conference second opinion with neurosurgeons at the Mayo Clinic, and they told me things that neither my ENT doctor nor neurosurgeon from Emory mentioned.  So, it was well worth the time and effort to connect with them.

Let us know how it goes!  I'm rooting for you gringosid!
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.

JohnH Sr

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Re: Newly diagnosed with symptoms
« Reply #5 on: May 18, 2022, 08:39:34 am »
Newly diagnosed as well. I found an excellent specialist in the VCU system and, on his advice, we're monitoring for now. I'm fascinated already by the nutritional suggestions on this forum....at some point I will probably try them out. Mainly just trying to adjust to the symptoms, especially sound coming at me from a random direction!
My prayers and best wishes to all of you here!
Symptoms began March, 2022
Ringing, echoing, pressure
MRI May, 2022: 3 mm AN in left ear
'Wait and see'; follow up MRI in 6 months

donjehle

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Re: Newly diagnosed with symptoms
« Reply #6 on: May 18, 2022, 06:06:51 pm »
Thank you, JohnH Sr, for making your first post on the forums!

Please don't hesitate to share your journey, and if you have any struggles, you have a lot of people here who know what it is like to be in disbelief over the diagnosis and to be angry and to be anxious and the whole gamut of emotions.  But those on these forums who have gone before us and not only survived, but thrived after their treatment, even with great challenges, have inspired me to keep going when I become discouraged.

You, JohnH Sr, are ahead of the game by finding a specialist you have confidence in.  And you know your option for the present time which gives a certain sense of peace.

My AN was only slightly larger than yours, and I am also on watch and wait with my next MRI scheduled for next month.  I am looking forward to see what the next one shows.

Since I am now deaf in my AN ear, I have a CROS hearing system, and when someone speaks in my left ear, I hear it on my right side.  It was strange at first, but I'm becoming accustomed to it.

Best wished on your AN journey, and if there is anything we can help you with, please don't hesitate to ask.  That's why we are here.
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.

 


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