Author Topic: New Here With Questions  (Read 1755 times)

LasVegasGirl

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New Here With Questions
« on: February 12, 2023, 10:45:38 pm »
Hi - I have not yet been diagnosed with AN but my internist is quite concerned about my symptoms.  I have a hearing test on 2/24 and an ENT appointment on 3/20.  The wait is making me quite anxious.

My tinnitus started in March 2021 and is in the left ear only.  I do not have any noticeable hearing loss, dizziness or balance issues.  Sometimes my left ear feels full.  The onset of tinnitus coincided with getting the first series of Pfizer COVID-19 vaccines.  The tinnitus was not that noticeable and easy to ignore for quite some time.  But over the past 6 - 8 months the tinnitus in my left ear is louder.  In late December I started noticing a tingling feeling near my temple and cheek.  The feeling is bilateral and varies with position.  I notice it more when I am sitting at my desk.

My tinnitus is worse when sitting or lying down.  If I take a nap the tinnitus is very bad when I first wake up.  Walking around or doing other activities almost always makes the tinnitus become unnoticeable.

I also had my first ocular migraine in June 2022.  I have had 5 ocular migraines since that time.  I went to the ophthalmologist and let her know I was concerned about a brain tumor.  She dilated my eyes and did not see any evidence of increased cranial pressure.

At this point I am just looking for thoughts on whether this sounds like AN. 

Greece Lover

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Re: New Here With Questions
« Reply #1 on: February 13, 2023, 01:06:05 pm »
We all know the anxious feeling you have about your symptoms.  But, everyone's symptoms are different and there's really no way to know about AN being there without an MRI.  A good ENT will do some advanced hearing tests, which can often give more of a hint about what is going on. But a lot of people have tinnitus and never know why.  Even if you do have AN, these things grow very slowly and are rarely an emergency, so while I know waiting is hard, in this case it is probably not going to change your case very much.

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.

mwatto

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Re: New Here With Questions
« Reply #2 on: February 14, 2023, 01:46:55 am »
On my Covid Long Haulers forum (includes many vax injured including me after Pfizer) many have your symptoms. Have a long its a very knowledgeable group. Suggestion this is micro clotting.
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

donjehle

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Re: New Here With Questions
« Reply #3 on: February 14, 2023, 08:00:46 pm »
Hi LasVegasGirl!  And thank you for making your first post on the ANA Forums.  As Greece Lover said, we can empathize with you about the anxiety you must be going through right now.  We have been there.

And Greece Lover is correct that the MRI is really the only way to know if you have an acoustic neuroma.  Symptoms might indicate a possibility for an acoustic neuroma, but the only way to confirm it is with an MRI.

Hopefully, your ENT will make a decision based upon your symptoms and upon your hearing test to place an order for an MRI.

You might be thinking (as I did), "How can I wait until March 20 to see the ENT?"  But the good news is that acoustic neuromas are rarely malignant, and they usually grow very slowly.  So, whether you see your ENT tomorrow or on March 20 would not make much difference in terms of the growth of the acoustic neuroma (if you have one).  So, try to relax and take it easy.  I know, I know it's easier said than done, but I wasted a lot of nervous energy worrying about my outcome, and all my worrying did not change a thing.

Please update us on the forums when you have your hearing test in 10 days, and then later when you see your ENT.  We are rooting for you!
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.

LasVegasGirl

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Re: New Here With Questions
« Reply #4 on: February 14, 2023, 09:41:45 pm »
Don,

Thanks so much for your comforting words.  It helps to have forums like this to benefit from the research others have done as well as receive emotional support.

I have been reviewing some of the excellent medical centers and highly skilled doctors many of you have engaged for your care.

I will report back once I receive my test results.




LasVegasGirl

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Re: New Here With Questions - Update
« Reply #5 on: May 04, 2023, 09:08:00 pm »
Hi — Thanks to all that provided support and responses to my post.  This discussion forum is a wonderful resource and I feel very fortunate to have found this group.

I wanted to give an update on my condition.  I had a hearing test which reported unilateral sensorineural hearing loss.  After the test, I came back to this forum to read and research more.  I quickly learned that an MRI is the gold standard test to determine if you have an acoustic neuroma.

I really appreciate the valuable information others have posted on this forum because it helped me prepare for the initial appointment with the ENT.  I had my questions ready and knew that I did not want to leave the appointment without a requisition for an MRI with and without contrast. 

The ENT did not want to order an MRI.  But I continued with my questions.  I have unilateral tinnitus along with unilateral sensorineural hearing loss of greater than 10 decibels across three consecutive higher level frequencies which I learned from this forum could be indicative of an acoustic neuroma.

The ENT ultimately agreed that I qualified for an MRI.  The MRI was performed with and without contrast. The MRI ruled out acoustic neuroma and nasopharyngeal cancer. 

I am now focusing on learning to live with the tinnitus. For now I am using meditation at night and low-level music during the day to deal with the tinnitus.  The ENT suggested I try Lipo-Flavonoid.  He said that about 40% of patients experience a reduction in their tinnitus after taking the supplement.  I have difficulty swallowing pills, so I am not sure this will be an option for me.  Does anyone have an opinion or experience using Lipo-Flavonoid?

Thank you again for sharing your stories and knowledge.  Acoustic neuroma is not a common condition and it is difficult to get up to speed quickly and gain the information you need to make sure you get the medical care you deserve.  Without this forum I would not have been as prepared for my ENT appointment and most likely would have not been granted the requisition for an MRI with and without contrast.

I wish you all the best.

Kind regards
Amy

MarlaB

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Re: New Here With Questions
« Reply #6 on: May 04, 2023, 10:04:44 pm »
Congratulations Amy. That is wonderful news... knowing what it's NOT can be more comforting than anything.

Marla B.




donjehle

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Re: New Here With Questions
« Reply #7 on: May 06, 2023, 01:16:40 pm »
Hi Amy!

As MarlaB said, that is wonderful news!  Thank you for sharing that with us.  And also thank you for sharing about Lipo-flavanoid.  I am not aware of that, so I will have to research it.  It would be amazing if some supplement could actually reduce my tinnitus a little.  If so, I will be extremely grateful to you, Amy, for mentioning that!

Best wishes on your tinnitus 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.