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I Have Acoustic Neuroma

A Acoustic Neuroma anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Acoustic Neuroma. You're not alone. 94 People

    Acoustic Neuroma Symptoms

    HI I got diagnosed with acoustic neuroma in December, My MRI showed a 3mm tumor on the left side. All my doctors suggested just watching for now. It started with a sudden spinning feeling like a bad vertigo and then a continuous sense of loss of banlance since. This is the...
    n2424 n2424 46-50, M 3 Responses Mar 15, 2010

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    I Have An Acoustic Neuroma & Other Tumor Of Unknown Origin

    I went to bed Dec 18, 2010 normal & woke the next morning with severe vertigo, complete hearing loss in my left ear, a severe headache, the sound of my heartbeat and an extremely loud high pitched ringing in my left ear & nausea. Long Story short, after 4 doctors: my GP said I...
    FrustratedinMaine FrustratedinMaine 46-50, F 8 Responses Jan 20, 2011

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    Be Smart

    Hi, I am 50 yrs old and was diagnosed with an acoustic schwannoma (neuroma) when I was 17 after being hit by a car and getting a basal skull fracture. The CT picked up an egg size mass. I rarely had ringing, no balance problems and could only appreciate a difference in my hearing...
    Jan 31, 2013

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    Currently Undergoing Testing

    I have had pulsitile tinnitus in my right year for over three years. Initially didn't think anything about it. Casually mentioned it to my doctor two years ago and he ordered an MRI. MRI came out clean, so he said probably allergies. Sounded reasonable to me so went on with my...
    MooninLC MooninLC 36-40 2 Responses Nov 10, 2012

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    Just Found Out I Have An Acoustic Neuroma

    Hi, I am 29 years old and I have an acoustic neuroma in my right ear. I have had a very small amount of hearing loss in that ear, in fact my doctors are surprised that I could notice the hearing loss as it is still good enough to pass a hearing test. My right side of my face is...
    canyongirl canyongirl 26-30, F 5 Responses Dec 10, 2012

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    Three Years Later:

    I had surgery for Acustic Neuroma almost three years ago. My tumor was large and because of lost time seeing all the wrong doctors prior to the eventual diagnosis, I was left without options and had to have surgery to have the tumor removed. For the most part things went rather...
    Vans444 Vans444 51-55 1 Response Oct 1, 2012

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    Acoustic Neuroma Removal

    I am 55 yrs old and had a 7cm acoustic neuroma removed in January of 2011....The surgery lasted 10hrs with a number of complications. Recovery has been slow and steady. I have lost hearing, have facial drooping, and cannot see out of my right eye(the tumor was on the right). It...
    Darnett Darnett 56-60, M 13 Responses Apr 5, 2011

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    Found Out Today...

    For several years I've had decreased hearing in my left ear. Abt a year ago, a shrill, faint ringing began and has continued, gradually getting louder. I did see my family doctor and he said my ear looked fine, but suggested an ENT bc of the symptoms. I put that off. Several...
    annie4468 annie4468 41-45 1 Response Jul 17, 2013

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    Just Told I Have An Acoustic Neuroma...

    I am 48 years old and started having vertigo at 20. It comes and goes. Sometimes I sleep it off for a few days, and other times it does not last as long. But every time though out the years I have been told I have positional vertigo and I just am vertigo prone. It seems these...
    ronda2300 ronda2300 46-50 Dec 22, 2012

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    My Experience Of Acoustic Neuroma

    I have along and complex story going back to 2001 My first symptoms were complete hearing loss, severe vertigo, bells palsy (which recovered 99% with intensive physio amazingly my surgeon said considering the pressure the nerves were under) I had 2 episodes were i just couldnt...
    jenny1702 jenny1702 31-35, F 3 Responses May 24, 2011

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    Diagnosed 3 Days Ago After Flunking Hearing Test The Week Before.

    Hello, my name is ladykin and i am 3 days old in this journey. I guess the title pretty much says it all. I must admit I am kind of a little in shock and overwhelmed. My ENT gave me the results on Wednesday of my MRI. But she just does things like hearing, sinus, etc. She...
    ladykin ladykin 66-70 1 Response Oct 19, 2012

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    Me Too

    I have acoustic neuroma that I received gamma knife treatment about 10 years ago. Get regular MRIs. Last MRI showed that it became smaller. but now have tumor in the parotid gland. Don't know if there is a connection to the gamma knife treatment. Totally deaf in right ear and get...
    jlopp jlopp 56-60, M May 16, 2012

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    Hi To All,

    I went to a hearing aid clinic that advertised free hearing tests in 2010.  BIG MISTAKE!!!  I had severe hearing loss in my left ear and they should have sent me to a doctor.  They did not, but they tried to sell me hearing aids.  I didn't buy them.  Woke up about 2 months...
    chipper24 chipper24 70+ Apr 22, 2011

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    Post Surgical Neuroma

    I was diagnosed with acoustic neuroma and treated with surgery more than 2 yrs ago  its hard to find others to share with-it has affected all aspects of my life in some form or another  it becomes a financial burden because the care involves frequent expensive testing...
    LPN1 LPN1 51-55, F 4 Responses Mar 15, 2010

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    Need Feedback

    i had the neuroma removed 9 years ago. since, i have done well but lost the hearing in the affected side. now i am experiencing extreme nausia. been to all kinds of doctors for stomach and intestinal problems. to no avail of course. my internalist has suggested a connection...
    kimmiehar kimmiehar 51-55, F 1 Response Nov 29, 2012

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    Post Acoustic Neuroma Surgery

    My name is Jodie Mccallister and I am 45 years old. Found out in May of 2013 shortly after my birthday that I had a large tumor called an acoustic neuroma. Surgery Sept 6 2013 so 7 weeks post surgery. I feel very fortunate I am returning to work in another week. My balance...
    jodiemccallister jodiemccallister 46-50, F 1 Response Oct 24, 2013

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    We Are In Trouble

    Here is my story.I started to have a bit of hearing loss, and ringing in my left ear. My regular Doctor gave me a hearing test and I failed. I was sent to a specialist.A ear, nose and throat guy. I went to his office,waited, I went into the room. The doc walked into the room,,to...
    lugan lugan 36-40 2 Responses Nov 3, 2011

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    Assesing Our Options

    My wife was diagnosed with an acoustic neuroma in the left auditory canal about 7 years ago. We took a wait an see course of action, because the growth was about 3.5 cm., and the max that the neurosurgery group was willing to attack with gamma knife was 3.0 cm. The condition hasn...
    kitbuilder kitbuilder 56-60, M Aug 25, 2012

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    Sfrs Treatment To Start In Sept 2012 ?!

    Hi i was eventually diagnosed with a AN 2 and a half years ago but only by chance. I had complained that my hearing on one side seemed "muffled", my ipod sounded funny in one ear and I had to use the phone on the opposite ear to what I had always used. It was only because I was...
    Porschebitch Porschebitch 41-45, F 3 Responses Aug 19, 2012

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    Accoustic Neuroma Unusual Symptoms

    Does anybody have throbbing behind the eye on the same side of the acoustic neuroma? It seems to be related to the muscle of the eye for it hurts every time I close my eye. I can hardly  touch my eyeball and it gets worse if I use eye drops.I also have the common nerve spot on...
    carmensilvia carmensilvia 66-70 2 Responses Mar 24, 2012

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    Advocate For Yourself

    In 2007, I spent eight months going from ENT to ENT with ringing in my left ear.  I was told everything from, "It is all in your head", to "It is a blocked tube in the ear and there is nothing that can be done but to wait it out."  At one point I really thought I was going...
    andsumore andsumore 41-45 1 Response Mar 30, 2012

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    Indecisive

    I was diagnosed in 2001 with a 2.5 cm AN on the left side, after some partial loss of hearing, balance and dizziness problem. As it didn't show any growth till now, I gladly forgot about it. However, last MRI Sept 2011 showed some growth and action must be taken. I'd rather have...
    domihs domihs 56-60 5 Responses Feb 22, 2012

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    How long until I'm normal again?

    - I was diagnosed with a very large AN in August 2013. I didn't have very many symptoms prior to the diagnosis. My symptoms were hearing loss (which I thought was from riding in the car next to open windows when I was a kid) and some slight balance issues the few months prior...
    mshelltucker mshelltucker 36-40, F Dec 10, 2013

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    I'm 41. I found out a week ago I have an AN.

    I'm been feeling dizzy, frog mind and lately some word tingling in my face. I am been a mess crying a lot. My older daughter is leaving me because she is scare . She is 19 yr old. My husband and little daughter almost 4 are motors. I'm very scare about the same. Dropping dace...
    deltree09 deltree09 41-45, F 1 Response Feb 19

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    OK, previously I was in denial

    but facts remain: 1. AN size is 3.2 cm vs 2.9 cm 2 years ago (procrastination) 2. Hearing is still 80-85 %, perseverance being attempted.. 3. Hearing tests show some loss at higher frequency.. 4. Inside ear feels clogged and occasionally hear constant noises (tinnitus...
    rm516 rm516 56-60, M 1 Response Dec 7, 2013

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    An 2006 And Again 2012

    Second time around with an AN. Thought it was over with in 2006 and it slowly grew back. It is now 3cm.
    crusecom crusecom 51-55 Aug 20, 2012

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    Deployment, Diagnosis, Treatment

    I guess the title sums it up. Kind of. I am 24 and I found out about my accoustic neuroma almost a year ago(June) while my husband was deployed. I originally had gone to get new eye glasses. They sent me to an ophthalmologist who sent me to a neurologist. They had a CT scan done...
    emmiesmommy1113 emmiesmommy1113 22-25, F 1 Response May 28, 2013

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    Not Again

    In 2004 I had an acoustic neuroma removed at UCLA>  There were no follow up MRIs or anything.   Last year, I started feeling symptoms so I asked my neurologist to order and MRI and sure enough there was another one.  Not too big.  UCLA neurosurgeon wanted me to do radiation...
    Michaelianmath Michaelianmath 56-60 2 Responses Jun 4, 2011

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    I am 24 years old, and just found out 4 weeks

    ago I have an AN. It started when I was painting my new living room and had a sudden hearing loss, and loud ringing sound. I researched what this was since it stuck with me for 3 days... tinnitus- This sucks! I called my mom, and told me I should get a second opinion. I am in...
    mstrickland mstrickland 22-25, F 2 Responses Jan 17

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    Why Me

    Hi im 35 years old and I was diagnosed with my a.n 3 years ago I get terrible ringing in my right ear and pins and needles in my face also very dizzy but it hasent vot much bigger than 1 cm
    bobbybaby888 bobbybaby888 31-35, M Aug 6, 2012

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    I was wondering if anyone experiences the same

    symptoms as me. I haven't had anything done on my tumor, the last MRI nearly a year ago showed 9mm. My hearing is such most people talking is just muffled, unless i turn my good ear towards them to hear what is said. The greatest thing i hate now, is even listening to my own...
    jeany58 jeany58 51-55 1 Response Mar 2

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    If It Looks And Feels Like A Cat...It Usually Is!!

    Hi I am a 35 year old Male in SA. I had bad hearing for a few years, nothing serious.. Bought an earpiece which didn't work, hated the ringing..but got on with life unaware. Recently decided to try get this hearing looked at again. Got the shocking news, i had an AN 3cm and 2...
    35hart 35hart 36-40, M 1 Response Mar 10, 2013

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    Debbras Tumor

    I just found this site and I will come back and share my story. I'm tired right now, I have been reading some of the stories and it really hits home,
    debbrass debbrass 56-60 Dec 11, 2012

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    Family Planning After Neuroma?

    Hi all! I was diagnosed with a large CP angle tumor (Acoustic Schwannoma) in May 2012. It was removed via surgey last July. A very small portion of the tumor was left in place, as it would have caused facial palsy and (perhaps) paralysis. My husband and I are considering...
    pinkyandmybrain pinkyandmybrain 31-35, F Apr 8, 2013

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    Just Diagnosed Today

    Made a trip to U of Michigan Hospital today.  My ENT Dr. had me get an MRI and it was discovered that I have a 2.0 CM Acoustic Neuroma.  I am so sad about this but the dr. is recommending surgery and I am very scared.  It seems that everyon has symptoms worse than before the...
    bjpytlik bjpytlik 56-60 3 Responses Oct 14, 2011

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    Acoustic Neuroma

    June of 2009 i noticed some hearing loss out of both my ears so i went to a Specialist who told me it could be "Nerve damage" but to be certain he wanted me to have a MRI done. Which then he sent me to another specialist "Dr Fucci"  who then told me i had bilateral 2 acoustic...
    Ashb Ashb 26-30, F 2 Responses Sep 21, 2011

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    Recently Diagnosed

    I was diagnosed with AN on 3/25/13. After consultation with an ENT, oncology radiologist, and otologist I decided to pursue CK. yesterday was the first of 5 sessions and then wait to see the tumor shrink and disappear!
    terisandler terisandler 61-65, F May 2, 2013

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    An Acoustic Neuroma Dilemma

    I was diagnosed with an AN in my left ear a year ago, told to monitor and check for growth. It has now grown and I need to make a decision between surgical removal or radiation. I have seen 4 neurosurgeons, and three of them have recommended radiation! All of them say the facial...
    kelcomeara kelcomeara 36-40 4 Responses Oct 17, 2011

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    Just Found Out That I Had An Acoustic Neuroma Yesterday, 11/13/2012

    Hi everyone, My name is Leslie. I am 44 years old. I am new to this journey as I was just diagnosed with a 1 cm. Acoustic Neuroma in my left ear yesterday. However, I am not new to the words, Acoustic Neuroma as my father had one back in 1989 in his left ear and had it...
    leslieh8859 leslieh8859 41-45 7 Responses Nov 14, 2012

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    Hello...

    Hello Everyone, my name is Brenda. I was dx with AN Dec '09 and had surgery to remove the tumor Dec 22. '09. My first post-op MRI (other than right after surgery) was Dec.2, '10. It took a long time to recover but I did. Unfortunately for the past few months I have noticed some...
    sillybutty sillybutty 36-40 2 Responses Sep 29, 2011

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    I Have An Accoustic Neuroma

    I have been diagnosed with a 5mm accoustic neuroma and can't wait to have it removed in January.  I am fed up with all the symptoms that go with the neuroma.  I've read some terrible stories about people who have had the operation done, but I have actually met people...
    bouverie bouverie 61-65 12 Responses Dec 5, 2010

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    An My Eye!

    It started with dizzy spells then Left sided hearing loss. Then I started walking like I was drunk. How I did not have any seizures I'm not sure. I went to an ENT and ended up getting a nose job, even after flunking a hearing test! I even asked that Doctor if I could have an...
    wingman64 wingman64 46-50 3 Responses Dec 12, 2012

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    Very Large Tumor

    I had a very large acoustic neuroma. Actually had two surgeries last year. My balance is still hosed up. Facial palsy and a crossed eye...so , the double vision is constantly badgering me. Anyway, I'm on disabilty now. I was a low voltage technician...but my balance is an issue...
    nairbitron nairbitron 41-45 3 Responses Nov 29, 2012

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    Related Experiences

    My Morton's neuroma is now gone... When I went on a ski trip with my family about eight years ago, I ended up in the ski shop because my foot hurt too much to ski. I thought that...
    mark7722 mark7722 46-50, M Jul 10

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    Sound and rhythm has great effect on me ... I don't remember lyrics and listen to that with whole heart.. But the acoustics works great with me
    lovencare lovencare 46-50, M Jul 11

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    Now I'm starting to worry. I just turned 15, and I still have no signs of puberty. No growth, no hair, no nothing. I've always been one of the smallest boys in my class, but it...
    zakkattakk zakkattakk 13-15, M 16 hrs ago

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    Now I'm starting to worry. I just turned 15, and I still have no signs of puberty. No growth, no hair, no nothing. I've always been one of the smallest boys in my class, but it...
    zakkattakk zakkattakk 13-15, M 1 Response 16 hrs ago

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    I have always loved fat but i never fully realized it until I got older. As a kid I would stuff pillows and blankets under my shirt simulating me being fat, and it always felt so...
    ilovefatforsomereason ilovefatforsomereason 22-25, M 14 hrs ago

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    I have a lot of internal conflicts. I am constantly blaming myself as to why certain things have happened to me in my life. I have secretly dealt with depression and self harm my...
    ImAWorkInProgress ImAWorkInProgress 16-17, F 13 hrs ago

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    YOU DESERVE TO HAVE SOMEONE Who Will Marry you and Love You forever. Who Will Worry and Care about You. Someone to Love You and Pamper You. Someone to Put You at the Center of the...
    imgreywlf imgreywlf 56-60, M 1 Response 9 hrs ago

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    Anybody else agree with this? 😔 Hi. My name is Hashimoto’s. I’m an invisible autoimmune disease that attacks your thyroid gland causing you to become hypothyroid.
I am now...
    sarahglass sarahglass 18-21, F 1 Response 9 hrs ago

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    Hey everyone...I'm new to EP and thought I'd use it as a way to express things I don't talk about often. I am 25 years old and have been disabled and sick for the last 3 years. I...
    Buttercup789 Buttercup789 22-25, F 1 Response 5 hrs ago

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