Author Topic: NEWBIE - JUST DIAGNOSED THIS WEEK  (Read 1194 times)

teresaiswar

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NEWBIE - JUST DIAGNOSED THIS WEEK
« on: September 07, 2023, 03:31:24 pm »
Hi everyone!
I am a new member to both the ANA and this forum. My name is Teresa and I am 48 years old. I had an MRI in July to look into facial numbness and swallow problems I've been dealing with for some time. The findings came back with high suspicion for acoustic neuroma/vestibular schwannoma. This past Tuesday 9/5/23, I saw a neurosurgeon who confirmed the dx.

He says it's medium in size (16mm x 9mm x 7mm). Good location in terms that as (if?) it grows it's well situated and won't press upon critical areas. But it's close to the cochlea so hearing loss with treatment options is certainly a possibility.

My primary symptom is tinnitus, somewhat mild but has been increasing the past few months. My doctor says the growth is NOT related to my facial numbess (AN is on right side, but my numbness is left side). No obvious balance issues at this time. Decreased hearing in my right ear for sure, I have an audiogram scheduled the end of this month as well as ENT followup

I've been anxious especially at night and it has disrupted my sleep. I have to sleep on the couch with TV on (with a timer) to take my mind off the ringing and the dx. I don't want to disrupt my partner's sleep and she can't sleep with noise. I'm averaging about 4-5 hours of sleep a night and I know this needs to change, for my health and sanity.

I am a professional musician as well as an occupational therapist who works with post op neuro patients so it's upsetting from a few standpoints. As a musician, I've taken consistent precautions to protect my hearing only to come upon this. As a therapist, I've seen post op patient successes overall, but also know the risks and that scares me. But I figure I'm in a grieving process and am hopeful I will get more accustomed to this, as I've seen patients do. Plus despite my dx, I know musicians with WAY worse hearing than me, bilaterally to boot!

Still, at present, I'm bummed.

My neurosurgeon is going to bring my case to the gamma knife conference they hold here at the hospital. He says this is the optimal approach for radiation therapy if I ever need to address surgically, but we both agree that monitoring is best for as long as I can tolerate.  He didn't seem too concerned overall about the urgency and he wants me to do another MRI in 3 months to compare eventually.

Finding support I know will be important so that's why I am here. Mainly I'm focusing on coping with tinnitus, as so many others have had to do both with and without a neurological issue.

Anyway, that's my story. I look forward to reading of others experiences and belonging and contributing to a supportive environment.

Thanks for reading!
Teresa

Diagnosed 9/5/23 - 16mm x 9mm x 7 mm

Greece Lover

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Re: NEWBIE - JUST DIAGNOSED THIS WEEK
« Reply #1 on: September 08, 2023, 07:49:40 am »
Teresa,
So sorry you had to join the club.  It sounds like you have a good sense of self awareness and good advice so far from your medical team.
I want to highlight the mental health aspect of these diagnoses.  It is something that the surgeons and ENTs often don't talk about, but it is real.  I saw a therapist a few times before and after treatment and I found that to be hugely helpful.  I never thought of myself as someone who would need that, but it works great!
It may not be the best bedside manner to say this to you so early in the process, but there is a path through these things, and a way to find a "new normal" that will allow you to live a great life. I am a musician, too, (not professional, but a big part of my life and my wife's profession). Every time I sing there is distortion, popping, and tinnitus.  I've figured it out.  I know there are many people in this forum who are musicians. You can search for their threads and you might find some helpful info or at least some solidarity.

Best of luck!

GreeceLover
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: NEWBIE - JUST DIAGNOSED THIS WEEK
« Reply #2 on: September 10, 2023, 06:08:55 pm »
Hi teresaiswar!  And welcome to the ANA Forums!

You might be interested in the Support Group for Musicians with Acoustic Neuroma.

It "meet" next Sunday, October 15, 2023 at 6:00 p.m. ET

I believe it is a Zoom meeting, and you need to register for it.  Any musician with an Acoustic Neuroma is welcome.

RSVP or learn more:
Stefanie Batson-Martin
407-493-7095
floridaswimmer14@aol.com
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: NEWBIE - JUST DIAGNOSED THIS WEEK
« Reply #3 on: September 13, 2023, 04:00:44 pm »
Sorry to hear you have joined the group, but welcome.  It took me almost two years to find the group and I am so grateful for it. My tumor is similar in size, sounds like a similar location and same symptoms. I made the decision to do radiation. In my decision journey I exhausted several groups. My wife said I was obsessed, i replied just being thorough. One thing I discovered is the decision is yours if you want to pursue. Doctors will have input, but ultimately it is your decision.  I got several opinions, okay a thorough 4.  I started with an ENT, his approach is surgery.  I am still with the same ENT whose has a great nation wide reputation, and he consulted on the radiation process. I spent a lot of time understanding the positive and negatives to radiation and surgery. The radiation is this Friday, CK at UNC on 9/15/23. If you want to talk more let me know.  I also think I understand the difference CK and GK.

Good luck on your journey,

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