Author Topic: My ear aches my ear aches my ear aches my ear aches  (Read 6565 times)

Notanotherthing

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My ear aches my ear aches my ear aches my ear aches
« on: April 23, 2016, 03:57:07 pm »
 Constantly have an earache in my AN ear.  I'm not supposed to have an  earache from a small AN...per my doctors....but always do and I feel it in like,  the edge of my jaw too.  But that's impossible...

 I guess I should have some cheese with my whine.  Sorry kids but I just needed to whine because  sometimes my earache - that's not from my AN (and I dont  believe it's not an irritated nerve nearby) gets to me ....::

Patti

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Re: My ear aches my ear aches my ear aches my ear aches
« Reply #1 on: April 24, 2016, 08:27:45 am »
I'm starting to get that too, but it is intermittent, not constant.   I think it is because I am approaching the 6 month mark post radiation. 
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

ppg01080

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Re: My ear aches my ear aches my ear aches my ear aches
« Reply #2 on: April 24, 2016, 12:12:27 pm »
I have an earache. I also have a small AN. Whine away.

Notanotherthing

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Re: My ear aches my ear aches my ear aches my ear aches
« Reply #3 on: April 24, 2016, 07:20:00 pm »
Hahaha !  ;)

It's just another phantom symptom I'm told I'm not supposed to have.

Blw

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Re: My ear aches my ear aches my ear aches my ear aches
« Reply #4 on: April 24, 2016, 08:22:31 pm »
When my symptoms first showed up (balance, hearing) shortly after I had such an intense ache in my mastoid bone (behind and below my ear) I couldn't sleep for days and had to get pain killers, then it subsided. Very strange.
« Last Edit: May 05, 2016, 07:39:42 pm by Blw »

MG

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Re: My ear aches my ear aches my ear aches my ear aches
« Reply #5 on: April 28, 2016, 04:24:12 pm »
I have been on W&W for more then 3 years and have an earache everyday. It has increased where now I take more Advil Gel Caps then I use to. My tumor size is 1.3 CM. It is time for Cyber Knife. :(

MG
Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016

Emmaline

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Re: My ear aches my ear aches my ear aches my ear aches
« Reply #6 on: May 03, 2016, 12:26:52 am »
Hi,
My AN is the same size -- 1.3cm -- as yours, and I too have daily ear pressure and aches. Will surgery or radiation erase those symptoms or, alternatively, make them worse? I've tentatively decided not to take action unless my AN starts to grow, especially if treatment will mean definite deafness.
Emmaline
« Last Edit: May 05, 2016, 07:36:16 pm by Emmaline »
56-year-old female: diagnosed August 2015 with a 1.2cm x 1.2cm x 1.4 acoustic neuroma; second MRI Feb 2016 showed axial measurement of 1.3cm x 1.3cm. Neuro-radiologist said size difference due to margin of error, but I still wonder if it grew.

MG

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Re: My ear aches my ear aches my ear aches my ear aches
« Reply #7 on: May 05, 2016, 04:32:03 pm »
Hi Emmaline,
Sorry I haven't been on the forum lately. I really wish I could tell you the answer to your question but being on W&W for over 3 years I really don't know if the pain will go away after Cyber Knife or surgery. I think there will always be some side effects afterwards. From what I have read, people can have headaches from the radiation, louder tinnitus, and balance issues. But maybe in some people they don't. It's so confusing! ::)
 If your tumor is stable and doesn't grow I would wait and watch for a bit and not rush into anything . While waiting just read everything you can about the different procedures. I have to admit my last 3 years were not too bad. I enjoyed a vacation up in the mountains with few side effects.  :)  As I write I feel my ear hurting so it's time to take another Advil! Best of luck with your decision.

Take care!
MG
Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016

mandihester

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Re: My ear aches my ear aches my ear aches my ear aches
« Reply #8 on: August 13, 2016, 12:37:53 pm »
I am newly diagnosed (this week) with a tumor- not officially AN yet although I know that is they type.  My neurologist appointment is in less than 2 weeks.
I too have an earache every single day which seems to reach to my jaw.  I have a full feeling in both of my ears, but more so on the right side where the tumor is.  I am also dizzy but not room spinning dizzy- I often describe it as a scramble feeling and I feel like I suffer from brain fog and can't concentrate for long periods of time.  I am also getting increasingly tired feeling. 
I guess I will find out much more at my neuro appointment.  The MRI results were told to be my the ENT- you have a small, benign tumor on your 8th cranial nerve.  I wanted to ask if it was acoustic neuroma because I had been researching it since getting an asymmetrical hearing loss diagnosis along with the images from my MRI that I got the same day as the scan.  However, hearing the news shocked me and I forgot to ask if she knew the name of the tumor.  :(
AN right side found August 2016- grape size
Retrosigmoid microsurgery October 2016
Before surgery- minor hearing loss, major balance and dizziness issues.
After surgery- severe hearing loss (it fluctuates), no dizziness, minor balance issues

MG

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Re: My ear aches my ear aches my ear aches my ear aches
« Reply #9 on: August 15, 2016, 07:12:05 am »
Hi mandihester,
Just got back on the forum to see this. It sure sounds like you have all the common side effects that we AN'ers have. How big is your tumor? After 3 W&W years I had to have Cyber Knife which is Steriotactic Radiation. You should really look into all possible procedures and find the most experienced doctors that treat AN's. It depends on size, location of tumor and your age. A lot of things to consider but do your research. I wish you the best.

MG
Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016

mandihester

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Re: My ear aches my ear aches my ear aches my ear aches
« Reply #10 on: August 15, 2016, 01:26:20 pm »
Hi MG-
Thank you for responding!  They have not told me the size yet- I'm assuming the neurologist will.  All the ENT told me was they located a small, benign tumor on the 8th cranial nerve.  From what I can tell on the MRI scale, it looks to be a little over 1cm. 
AN right side found August 2016- grape size
Retrosigmoid microsurgery October 2016
Before surgery- minor hearing loss, major balance and dizziness issues.
After surgery- severe hearing loss (it fluctuates), no dizziness, minor balance issues

Sheba

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Re: My ear aches my ear aches my ear aches my ear aches
« Reply #11 on: August 18, 2016, 11:44:28 pm »
Mandihester- sure sounds like an AN from the description (AN is a benign tumor of 8th cranial nerve). 

Even though 1cm is "small", your symptoms sound concerning - brain fog, scrambly dizziness, tiredness -- if the tumor is gradually messing with your balance nerve function, your brain can be tired as it is trying to adjust to changing "input" on the AN side (the nerve not working reliably any more).   Check with your doctors, they can do some testing to see if your balance nerve is impaired. 

You may want to treat it sooner than later if the symptoms are interfering with your quality of life, but you should thoroughly research your options. 

You may want to request vestibular therapy now (pre treatment), and see if it helps you at all.
Diagnosed 4/2016 1.4cm AN.  Mild hearing loss and tinnitus.
Removed 7/2016 at Keck, Drs. Freidman and Giannotta, Retrosig approach.  Lost hearing in AN ear, but no other negative outcomes.  Will investigate bone anchored hearing devices.

mandihester

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Re: My ear aches my ear aches my ear aches my ear aches
« Reply #12 on: August 19, 2016, 06:21:15 am »
Sheba- thank you for your input.  After researching a lot, I do feel like I'm very symptomatic.  Some days are worse than others.  I will definitely ask about vestibular therapy when I go see the neurologist on Monday.  Me ENT has given me a list of brain exercises to do as well. 
From your description, you were diagnosed and had surgery this year.  How are you feeling now?
AN right side found August 2016- grape size
Retrosigmoid microsurgery October 2016
Before surgery- minor hearing loss, major balance and dizziness issues.
After surgery- severe hearing loss (it fluctuates), no dizziness, minor balance issues

Sheba

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Re: My ear aches my ear aches my ear aches my ear aches
« Reply #13 on: August 21, 2016, 06:52:45 pm »

I am almost 5 weeks post op.  I feel really good -  no pain.  I am adjusting to SSD (I lost hearing in right ear).  I am working out every day (walking & cardio machines) and doing VT (vestibular therapy) exercises to get my balance adjusted.  I will go back to work after one more week of recuperation.

I can "tell" that my balance nerve is gone when I move certain ways, I believe in doing a lot of activity to get the "rewiring" to occur.  I plan to add some jogging, swimming, yoga etc. maybe at about 12 weeks.  And the VT exercises are key for the subtle interaction between the three parts of balance - eye, vesitbular, and proprioception.  Good to read up on that so you understand what to expect and why it is important to do what seems like very tedious exercises to "repair" after.  www.vestibular.org is a great resource.

Good luck !
Diagnosed 4/2016 1.4cm AN.  Mild hearing loss and tinnitus.
Removed 7/2016 at Keck, Drs. Freidman and Giannotta, Retrosig approach.  Lost hearing in AN ear, but no other negative outcomes.  Will investigate bone anchored hearing devices.

 


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