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  • Possible Acoustic Neuroma

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    Old 10-02-2003, 11:12 PM   #1
    stacih
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    Question Possible Acoustic Neuroma

    I am a 34 year old woman, normally very healthy, and I am going through hell. It started in 1999 with my left ear feeling plugged up. I complained to my doctor on numerous occasions, and he insisted it was fluid in my ear each time (even prescribing me antihistamines which didn't work). I had an episode of vertigo in 1999 as well that left me unable to move (because nausea and spinning sensation was so bad) and I couldn't talk (tried to yell to husband). I broke out in sweat and vomited immediately following this weird episode. In 2001 I had another vertigo attack while in the shower. I thought for sure I was going to die, and again it dropped me to the floor and the above symptoms were present only this time it affected my vision (everything got really dark). In 2002 my symptoms progressed to fluctuating hearing loss (when my ear feels really "full" I don't seem to hear well), and pain at the jaw right in front of my ear. My doctor told me to see a dentist. I saw a dentist who is very familiar with TMJ (plus he's been my dentist for 20 years now). He was absolutely positive my problem was not dental related and sent me back to my doctor. Shortly after my dental visit, I started to have rigors (chills so bad I would shake violently). I didn't have health insurance, so I didn't go back in...yet. In January of this year I had another vertigo attack that was much more severe than the others, even causing me to drool. (I should note that I did not know these were attacks of vertigo until recently). I had a bad cold at the time, so when my cheek on that side felt like I had a shot of novacaine I ignored it, though that numbness lasted for about 2 weeks or longer after my cold went away. I went back to my doctor in April because my ear was having stabbing pains and was feeling really full at the time. He removed excess ear wax and gave me ear drops for a "red and irritated eardrum"... The eardrops were used for the complete course and did NOTHING for me. I went back to the doctor for followup after that and he insisted I see a dentist again because my ear looked fine. He even told me to get a new dentist. Well...two days later I woke up and the whole bottom part of my ear (down to the lobe) and my face in front of my ear were completely numb. I FREAKED OUT!!!! Called the doctor who again said to go to the dentist. I called my dentist and told him about the numbness, he suggested I can my doctor and see an ENT (thank god for dentists!!) I went to an ENT at that time, who did not diagnose me, but was able to tell me that my "fullness" was from Eustachian tube dysfunction caused by an underlying problem (which I will get to) and NOT by fluid in the ear. He examined me and decided I need to have an MRI to "rule out an ear tumor" Unfortunately that is as far as we got for now...you see...my ENT advised me at that time to consider not seeing him again until I get health inurance because "this could get very expensive". He feels that I may have an Acoustic Neuroma and says that if it is not that they will have to look for more serious problems such as vascular problems involving the veins in my brain. I am scared to death, I must say. I have to wait (due to a pre-existing clause with health insurance) until Jan 31st to have an MRI. My doctor's nurse does not want me to wait, but I cannot pay for it on my own so I must. Since then I have this horrible pulsating in my ear that beats to the rhythm of my pulse. I hear it mostly when I lie down in bed (especially if it's nice and quiet in the room). I have also lost weight and AM NOT trying to!!! (60 pounds in 2 years). I no longer have facial numbness, but I do get sharp prickly pains in it now (just on my left side, though). My left eye has started to have a "full" sensation now as well. Nothing appears wrong with it when I look in the mirror, but it feels funny sometimes. Anyone have an opinion on whether I should wait it out? I am truly scared, and I have a six year old daughter that needs her mom to stick around a while :-) I know this was a long post and I apologize for that...

     
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    Old 10-14-2003, 06:07 PM   #2
    diabia
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    I know how scared you must feel. I was diagnosed with an acoustic neuroma this spring after an MRI and hearing test. My hearing on the left ear (same side as 1.5 cm tumor) is 2/3rd gone. I was tired all the time, experienced constant tinnunitis, headaches, pain in my left side of face (from my jaw to the eye). My insurance company paid out $75,000.00 since I started doctoring with this. I did not have surgery but I had gamma knife radiation in June. My next MRI is for Nov. to see if the tumor is dying and decreasing in size. If anything get your hearing tested on each individual ear. This will signify why you feeling this way. I will be more than willing to keep in touch with you. No one can understand what you are going through except yourself. Diane

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    Old 10-14-2003, 06:42 PM   #3
    stacih
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    Thank you so much for your reply :-) I did having my hearing tested on both sides and was told it is within normal range. This was just tone testing, but I feel better now knowing my hearing hasn't been affected. Over the past few weeks my tinnitus has subsided, and I haven't had numbness in months, but sometimes I get little prickly pains on the left side of my face. My ENT notes say that I have a blunted corneal reflex on the left side (someone told me that means the nerves are working, just not well). So now I wonder if I'm just worried about nothing and if I should just cancel insurance and be done with it...

     
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