Author Topic: Possible AN - not yet diagnosed  (Read 6417 times)

writerchic

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Possible AN - not yet diagnosed
« on: April 18, 2015, 02:30:38 pm »
Hi everyone,

I am new to this forum and brand new to the world of acoustic neuromas. I just had some tests yesterday which confirmed the "significant" (50%) hearing loss in my right ear which I noticed late last fall. I've had tinnitus in that ear solidly for a year and less consistently for 3 years. A little backstory on that, if you're interested: The ringing started in my right ear with high pitched loud sounds that overwhelmed me momentarily then went away. That happened fairly often for several months. I remember over the course of the next year being sensitive to pressure changes and the tinnitus was periodic everyday, but soon became an ever present thing. I didn't think much about it until I noticed a strange feeling of pain/pressure in the area around the back of my ear, and then hearing loss in that ear too. I went to the doctor in December to inquire about the hearing loss and strange pain, but he didn't find anything physically wrong with my ear, I had no viruses, and no trauma, so he said it was probably TMJ and I should practise relaxation techniques.  Except for the ear issue, I didn't have any other symptom of TMJ. I attributed it all to advancing years (I'm 51) and endeavored to get more exercise.

Recently, one of the teachers at my daughter's school announced she is having surgery this summer to remove several tumors in her brain that have caused her to lose her hearing in one ear. I was really stunned to learn that a tumor could cause hearing loss.  I looked it up and found, of course, acoustic neuroma. I was equally stunned to see that unilateral hearing loss and tinnitus, such as what I've experienced, is usually the first presenting symptom of an AN.  So I made an appointment with the ENT.  He was vague about potential causes of my sudden hearing loss (50%, most in the high tone range). He said the auditory nerve was at fault and that the loss was permanent. Even though Ans are super, super rare, he said, he nonetheless ordered the mri of the brain/iac to rule it out, and I'll have that in 2 days time.  Would he have ordered such an expensive test if it weren't really necessary?

Since I first learned of AN, I have been reading people's stories, which I think are very important. I know for me personally it really helps to identify with your experiences, and I get the feeling that others feel the same way about it that I do.

--what was your experience when you first had a hearing test? Did your doctor immediately suspect an AN or was the doctor vague about potential causes? Did you leave your appointment understanding your symptoms?

--did you first hear about ANs after you had been given an MRI, or did the doctor discuss the possibility with you at the time you were first evaluated?

--I see lots of stories post diagnosis. Do you have any stories you want to share about the actual diagnostic process?

Well, if you're still reading, I'm grateful and thankful. I can't say I'm looking forward to potentially being a part of this club, which my doctor assures me is exceedingly rare.  He actually said, "So when I call you to tell you that your MRI is normal, which is extremely likely, we can discuss hearing aid options."  I do plan on chatting soon with the teacher I mentioned above, to make sure she finds out about this terrific forum.

Warm regards,
Writerchic

--
"Super Newb" Confirmed 4/23/15 I don't have an AN. Have unilateral permanent hearing loss of 50% and tinnitus (right ear) from unknown problem with auditory nerve, minor pain, no facial issues, vague dizziness.

CHD63

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Re: Possible AN - not yet diagnosed
« Reply #1 on: April 18, 2015, 03:42:08 pm »
Hi writerchic and welcome to this forum, even if not formally diagnosed at this point .....

Although we all hope you do not have an acoustic neuroma, we are here to support you in any way we can ..... by sharing our experiences.  The main thing is to find out what is causing your symptoms and receive appropriate treatment.

In my case, a lack of balance issue was my first presenting symptom ..... followed by a feeling of fullness in my left ear and subsequent noted hearing loss in my left ear only.  My ENT ordered the MRI out of an abundance of caution, stating that he was "ruling out anything more serious."  I did not have tinnitus until after my first surgery.

That being said, every AN patient has a unique set of symptoms and series of events leading to his/her diagnosis.

Many thoughts and prayers .....  Be sure to let us know what your MRI shows.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

ANGuy

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Re: Possible AN - not yet diagnosed
« Reply #2 on: April 18, 2015, 03:58:32 pm »
Don't get ahead of yourself.  Wait the couple of days for the MRI and ask for the CD of the scan when you are checking out.  It will save you a trip back to get it if you decide you want it.  Typically, you should get the results of the MRI in a day or two.  So, at the moment, you simply have to wait a few days to get the only information that can determine if you have an AN or not.

Anything else you do is simply speculation which will result in anxiety.

Typical hearing loss from AN's is not just at the high frequency range.  It is the low and high range.  Your graph on you "bad" ear will be low, then up in the middle, and then drop off again.  I'm sure there are exceptions to this, so again, this is just more speculation.

Your Dr ordered the MRI because it is the responsible thing to do.  They aren't THAT expensive as medical things go and they aren't THAT unusual.  Us AN'rs get MRI's like some people get haricuts ;D

Hang in there, relax as best you can, and be patient as it is the best thing for you right now.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

arizonajack

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Re: Possible AN - not yet diagnosed
« Reply #3 on: April 18, 2015, 05:20:42 pm »

--what was your experience when you first had a hearing test? Did your doctor immediately suspect an AN or was the doctor vague about potential causes? Did you leave your appointment understanding your symptoms?

--did you first hear about ANs after you had been given an MRI, or did the doctor discuss the possibility with you at the time you were first evaluated?

--I see lots of stories post diagnosis. Do you have any stories you want to share about the actual diagnostic process?


You can read my history at the link below this post.

It reviews my pre-diagnosis experience at length.

I agree that you are getting ahead of yourself and only have a few days to find out if you have the unwanted hitchhiker.

But, at the risk of appearing pessimistic, if you put up $100 and you bet that you don't have an AN I would cover the bet. (And I'm no gambler.  ;D  )
« Last Edit: April 18, 2015, 05:22:13 pm by arizonajack »
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

PaulW

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Re: Possible AN - not yet diagnosed
« Reply #4 on: April 18, 2015, 05:46:51 pm »
I had a friend who had an AN. She died at age 34, 3 weeks after the surgery to remove a 2cm AN. A rare complication from the anaesthetic, caused her liver to shut down.
So when I suffered some hearing loss, and ruled out wax, and infection, myself... Then worked out my hearing loss was sensineural, by pressing my daughters conductive speaker against my head.. I knew that an Acoustic Neuroma was a real possibility... I went to my GP who also treated my friend...
I knew what it could be and so did he, I could see his draw drop, when I told him my symptoms and how I had proved that my hearing loss was sensineural. He confirmed that it was with a tuning fork..he sent me off for a CT Scan.
He didn't say anything but I knew exactly why he was sending me away for a scan, The concern on his face was nothing like I had seen in the 22 years I had been seeing him.
CT scan came back suspect which lead to an MRI and a positive diagnosis.
Wanting to avoid surgery and preserve my hearing I chose to have Cyberknife proactively.
I live in Australia, there was no Cyberknife or Gammaknife in the country in 2010 so I flew to Germany and got it zapped 3 weeks after diagnosis. Still have my hearing. Life goes on
« Last Edit: April 18, 2015, 05:49:06 pm by PaulW »
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

Janey

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Re: Possible AN - not yet diagnosed
« Reply #5 on: April 18, 2015, 08:46:02 pm »
Hi Writerchic,
The account of your early symptoms sounds just like mine.  I developed the episodes of tinnitus
that escalated to 24/7.  I felt the fullness, mild discomfort behind my ear, and in about a year's time
have lost more than 50% of my hearing.  I haven't seen my otologist since last summer, so I'm not
sure what the actual numbers are on the hearing loss - just that it's almost useless.  I had my first
MRI in October of 2014 and was diagnosed with a 4mm x 7mm acoustic neuroma.  My next MRI
is scheduled for May 4.  Now in addition to the tinnitus and hearing loss, I am experiencing some
dizziness and balance issues.  I am hoping to continue in the watch and wait status, and still have
not decided on a course of action if it is indicated.  I do hope you have good news after your
upcoming MRI - keep us informed.  Prayers coming your way!

writerchic

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Re: Possible AN - not yet diagnosed
« Reply #6 on: April 19, 2015, 01:31:11 pm »
Wow, let me just start by saying thank you!! to everyone who has responded or just read the post.  I feel really blessed to have your kind words and support! 

Janey - Thank you for your comments! I will pray that your condition stabilises. Keep us informed!
PaulW- I am really sorry for the loss of your friend. I lived in Brisbane for a few months, loved it! So many things I miss about being there. I'm glad that you were able to get the treatment you needed. Thank you for sharing your story.
Arizona- You are an inspiration to so many people! I see that you've been through so much but have such a great attitude. Yours was one of the first stories I read and your weight loss story inspires me to lose a few pounds myself :D
ANGuy and Arizona, I agree with you that I'm way ahead of myself. I want to blame it on being the kind of writer who tends to write the ending first, but I know deep inside myself that I need to see where I might be going before I get there. I have second guessed myself a hundred times just in the space of 36 hours, thinking I am an idiot for agreeing to an MRI. Even over the past week, I have struggled with the commitment of seeing an ENT. Surely this is not my fate?
Clarice- Thank you also for sharing your experience. All of you are such brave people, and so kind and generous. I really appreciate the support you've given already and even if I don't become a member of your exclusive group, I want you to know that there are people in the world who care about YOU and feel empathy for your situations.

I'll post again when I get the results of the MRI. I have been taking your advice - relaxing as much as possible and tending to business as usual. I'm a single mom with two kids (one in college) and have plenty to keep me busy!

Hugs to all
Writerchic
"Super Newb" Confirmed 4/23/15 I don't have an AN. Have unilateral permanent hearing loss of 50% and tinnitus (right ear) from unknown problem with auditory nerve, minor pain, no facial issues, vague dizziness.

writerchic

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Re: Possible AN - not yet diagnosed
« Reply #7 on: April 22, 2015, 06:33:17 pm »
Hey there, just checking in. Had my two-hour MRI (with and without contrast) Monday, 4/20, but am still waiting for the results.  Wishing everyone a good evening!!

Writerchic
"Super Newb" Confirmed 4/23/15 I don't have an AN. Have unilateral permanent hearing loss of 50% and tinnitus (right ear) from unknown problem with auditory nerve, minor pain, no facial issues, vague dizziness.

writerchic

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Re: Possible AN - not yet diagnosed
« Reply #8 on: April 24, 2015, 05:28:16 pm »
Hi everyone,

So, good news!!! My scans were negative. No tumor to be found. Also, nothing to indicate why I've got tinnitus and 50% hearing loss in my right ear only, but, hey! Beggars can't be choosers! I want to thank everyone for their lovely comments. I have taken your advice and requested a copy of my scans.

Best to everyone,
Writerchic
« Last Edit: April 24, 2015, 08:04:53 pm by writerchic »
"Super Newb" Confirmed 4/23/15 I don't have an AN. Have unilateral permanent hearing loss of 50% and tinnitus (right ear) from unknown problem with auditory nerve, minor pain, no facial issues, vague dizziness.

keithmac

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Re: Possible AN - not yet diagnosed
« Reply #9 on: April 26, 2015, 07:17:48 am »
Hi everyone,

So, good news!!! My scans were negative. No tumor to be found. Also, nothing to indicate why I've got tinnitus and 50% hearing loss in my right ear only, but, hey! Beggars can't be choosers! I want to thank everyone for their lovely comments. I have taken your advice and requested a copy of my scans.

Best to everyone,
Writerchic

Great to hear it was good news.  My situation's similar except for one thing - I'd trade it for yours.

writerchic

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Re: Possible AN - not yet diagnosed
« Reply #10 on: April 26, 2015, 08:23:09 am »
Thank you, Keithmac! I know it sounds silly but I'm the sort of person who would absorb someone else's sufferings if it were possible. About 8 years ago, my oldest daughter fell and hit her head on the street curb, fracturing her skull and bursting her eardrum. I prayed mightily that night. She teases me now that I have absorbed her injury. I can lend my good ear if you want to share your story with me.
"Super Newb" Confirmed 4/23/15 I don't have an AN. Have unilateral permanent hearing loss of 50% and tinnitus (right ear) from unknown problem with auditory nerve, minor pain, no facial issues, vague dizziness.

 


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