ANA Discussion Forum
General Category => AN Issues => Topic started by: Stand on September 23, 2010, 12:48:56 pm
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Thank you guys for all being so kind as to responding to my messages on here when I have not been diagnosed with anything. As stated in earlier posts, I just have a lot of symptoms of it and my ENT is sending me for an MRI. But did any of you have one-sided pain? A for instance, the right side of my face has been having pain all year. It comes and goes. But it will originate on my cheek bone and will radiate up to my eye (making it weak-feeling) and will then radiate to my right temple and right side of my forehead. If it gets really bad, it goes to the back of my head. My right cheek and especially cheek bone feels VERY numb. A numbing throbbing sensation.
HERE'S MY QUESTION: For all of YOU GUYS, what were your symptoms before surgery?
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Hi, Stand ~
To get right to it, my symptoms consisted of a very gradual unilateral hearing loss, steadily increasing imbalance, an intermittent 'stabbing' pain where the AN was (unknown to me at the time) and a loss of my sense of taste, resulting in a severely decreased appetite and eventual loss of over 30 pounds. I did not experience facial numbness or headaches. As you've learned by now, one patient's symptoms do not define the criteria for diagnosing an acoustic neuroma. Your symptoms seem to be nerve-related but only the MRI scan will explain why this is happening. Unscientific speculation will only serve to confuse you.
Jim
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Thanks. I like learning and this is all new. So personal stories are interesting.
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...so are you just asking the "guys" - MALES?? ???
K ???
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Tinnitus, unilateral hearing loss, and mild headaches were my pre-surgery symptons. Eventual MRI showed a golf ball sized AN pressing against the brainstem, but all turned out pretty well for me. Good luck
Patrick
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...so are you just asking the "guys" - MALES?? ???
K ???
:) No, that's just how I talk. I meant ..... not what I'M going through but what you guys went through or are going through.... :)
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The first thing I noticed was my horrible balance. It developed over many years now that I look back. I thought it was just a sign of aging (I was 49 at the time) I notice that my balance was especially bad in the dark. I had tinnitus in my left ear and numb spots near my mouth. When I brushed my teeth I made a huge mess and couldn't control it. Now I realize I was already at a HB2 before I was every diagnosed. I also had these funny headaches. I still have them. They aren't a normal headache but more of a sudden pain in an exacty spot that comes and goes. (right where the tumor was). All my symptoms were so gradual it took me years to go to a doctor because they all seemed kind of dumb at the time.
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My balance was increasingly bad. Probably from the time I was 42 or so. I had perfect hearing, no other problems. I was at a routine doctor visit after one of many falls and she asked a bunch of questions and sent me for an MRI. I had a 3.5 cm AN. Balance problems have not improved at all since surgery and three years of PT.
Brenda
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Early symptom were gradual loss of hearing. I was also having mild dizzy spells around the time of initial consult with an ENT, but did not associate those with the tumor. Similarly, there were other problems that had built up over the years that I had not recognized as symptomatic until well post-surgery from the large mass compressing my brain stem.
Seriously though, Jim is absolutely correct in his suggestion "Unscientific speculation will only serve to confuse you." Wait for the MRI as there could be other explanations.
Even if you do have tumor, no matter how many of our stories you read here, your journey will be different. It will be uniquely yours. I know the waiting is hard. It was hard for me between the diagnosis of the possibility of a tumor and the MRI. The four days after the MRI after being told there was tumor by the radiologist and the actual consult was bad. Waiting can just suck.
If reading this stuff helps with the waiting, then good. if not, maybe a good Stephen King book will take your mind off of things.
-Tod
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Thanks, Tod. :) And I know I need to stop thinking about it. But this year has been a bad year for me with my hearing loss and noise (and the pounding hearbeating in my ear). I just wish time would scoot by a bit faster than it is. Because I would like to know what is going on.
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Sudden partial hearing loss, hearing deteriorated rapidly over two months, but has since improved from GR 2 to GR 1
Balance had been deteriorating for a few years but didn't realise it until it was pointed out.
Feeling like you were a little hung over when you haven't had anything to drink for months. (I put this down to Balance problems)
Mild Tinnitus
Difficulty concentrating.
Eyes not moving quickly to the correct location after sudden head movement. (Most ANers have this and dont even notice until it is pointed out)
It was the hearing loss that sent me to the doctor, the rest I thought was part of growing old!
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Started with headaches but just thought that was like everyone else, then sudden hearing loss in my left ear accompanied with tinnitus. Just thought my ear was blocked and so did all the doctors as I had the flu the week I lost my hearing, coincidence that really affected my diagnosis. Balance was affected next, was qute bad and by surgery time I could not walk unaided. As soon as I had surgery my balance was back to almost normal no PT exercises needed. The Nystagmus was always present and I was unable to do my job or drive. I was only 37 so I knew something was wrong as old age was not a factor, MRI showed a nice big tumour pushing on the brainstem.
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My hearing loss started about ten years ago. I didn't think much about it. Then about one year ago, I was fine one week and then walking like a drunken sailor the next week. I took tai chi to help with my balance. It didn't improve much. My internist said it was just my age. Three months later my balance was worse. I strongly expressed it was not my age. Sent to a neurologist who ordered an MRI. They found a 2.6 cm. AN. Best wishes on the results of your MRI.
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Thanks for that. I've finally learned to relax. I think it was a previous comment of "read a Stephen King novel". I realized that I was spending too much time fretting of a "what if". I think it was my doctor's comment of, "We just need to rule out, or in this case, rule in" that sent me worrying. I wasn't at first but as time went by, I really started to fret. But in regards to hearing loss I can certainly understand where you're coming from. I lost my hearing in my right ear ten years ago gradually. I was a receptionist at the time and I remember just thinking, "What is wrong with this stupid phone!" So anyway. I'm finally not going to fret. Hopefully everything is just.....what it is....and not a tumor. Thanks for humoring me, guys!
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oddly enough, i didnt have any symptoms at all. I hit my head and went to the ER for stiches. They did a CT-scan there and noticed "something odd" and the rest is history.
A week later I was diagnosed with a 3.5cm AN compressing my brain stem. I really hadn't ever noticed a single symptom.
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I had episodes of being off balance ,vertigo,sinus crap for 10 years..it would come and go...they thought inner ear infection...then mieniers...then i started waking up feelng like i had been hit w/ a base ball in the back of my head...then the tinnitus came and it was then i said o.k. go to Dr. demand catscan.My perception was also going fast...i side swiped 2 cars in 2 months...just took the rearviw mirrors right off..trying to drive down a narrow st. both time right side...then i started missing steps going down stairs and the famous you think you cleared the doorway but you didn't relly and totaly killed your shoulder banging into the wall.
Then other times i would have no symptoms at all...i went zip lining in Mexico...2 months before being diagnosed w 2cm
accousti neuroma in the inner ear canal extending into the cerebella pontine angle...kissing my brainstem is what the neurosugeon said.
soo..all sorts of thing can happen....and you never connect them till they all add up.Nothing would surprise me at this point.
i did have facial numbness and one time my face just refused to show any expression on one side...i didn't even notice my boyfriend did.I also got the corner of the mouth twitch and eye twitches.
I had surgery 2008.
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I had tingling sensations on the right side of my mouth. It felt like the right side of my tongue had been scorched with a hot drink. I also had hearing loss on the tumor's side, and was just starting to get a little clumsy.
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I didn't have much in the way of symptoms and the balance problems were only when I was really tires. Mostly had issues wtih headaches...
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The way the docs found mine, was a numbness in my lips that over 5 or 6 months then spread to my chin a little. Since it had been going on for so long, they sent me in for an MRI that same day. Said I had no signs of cells palasy or drooping or any thing else.
The MRI found the tumor and I was very shocked to find out when I went to the ENT about a month later that I had absoultley no balance left on the AN side. I flunked the test completely. The doctor said I must have over compensated on the left side for all these years and never knew it. It finally explained the bumping into walls and going off klilter every now and then. But a complete loss was a shock to me. To think your body can make up for something is amazing. I am know post surgery and my balance is still bad. I'm trying to do exercises to regain some it, will take lots of time, I will get better.
Keep us posted as to what you find out on your scans. These are great people here and will help you like they helped me.
Susan
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The symptoms which led to my diagnosis were a feeling of fullness and diminished hearing in my left (AN) ear.
Once I had the MRI that showed the acoustic neuroma my ENT referred me to a neurotologist. He did some balance tests and it became evident that I also had balance issues that I was totally unaware of.
Jan
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Stand:
My first symptoms was sudden hearing loss on my right side, the feeling of fullness in that ear & tinnitus. Not long after, the vertigo began. I didn't have a clue that all those symptoms would be related. I didn't notice the poor balance until after I was diagnosed.
Syl
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Wow, it's really interesting to read all these and see how different each one is! Mine, too, was very gradual...started years ago with just an "off" feeling, like a little lightheadedness, went to dr., he found nothing in my ears. I've had dental issues for the last 10 years which is too long a story to go into but basically, I thought my tinnitus was from dental work! An ENT checked me out and said I just needed hearing aids. (I didn't get them) When my new dentist was putting on a crown, she had used light novacain....oddly, from that day, I had the numbing sensation in my mouth and couldn't taste on that side. When I told the dentisit, she was baffled, she said that never happened before and she said I should wait to have any more dental work done til I figured that out. I was convinced for a while that she had hit a nerve when she put the novacain in and waited to see if the feeling would come back, which it did not. One day, I was in the building of a ENT who I know personally and decided to just stop by and ask him if he he could help because things seemed to be getting worse and it was getting more uncomfortable. They made an appointment, he suspected an AN right away and ordered an MRI and the rest is history. Reading all these entries helps me to see why this takes so long for us to find....because the symptoms are sometimes so vague and slow growing and can be so different, depending on size, location, etc. For each of us, it's been such a different journey! Sorry this got so long :o Anyways, I hope you find out what is going on soon and keep us posted. Best to you:) mcihelle d.
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...oh yeah...and one other thing I just remembered...I have had for probably 5 years or so my eyes sort of "jump" when I was reading something. It's gone now, but I had forgotten about that until just now when I was reading other entries.
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oddly enough, i didnt have any symptoms at all. I hit my head and went to the ER for stiches. They did a CT-scan there and noticed "something odd" and the rest is history.
A week later I was diagnosed with a 3.5cm AN compressing my brain stem. I really hadn't ever noticed a single symptom.
That is....wow....quite a story! I'm so sorry you went through all of that. :( Do you feel blessed you unfortunately had to go to the ER that day?
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Well, you guys. I appreciate you all helping me feel better. I mean, I invade your forum and I talk about my issue and yet you don't boot me out. :) I've been doing really good on the fear portion of the unknown for the past two days. It helps that my husband's department has had training days yesterday and today. Yesterday they did a mock rescue in a house they're going to burn. I went to take pictures. Then today they had a propane tank class where they set it on fire and flames shoot fifty feet into the air. The fire chief told me to stand just 30 feet away, to be able to get great pictures. The adrenaline of being so close to something like that really helped with my stress. But as I'm writing, anxiety is creeping back in. Tomorrow is my last day before the MRI. It's set for 7am on Monday. I really hope something is resolved. One way or another. The unknown, is really bad on my family. Especially my kids. I overheard my nearly 8 year old daughter mocking me today. She told the others, "Don't talk so loud! What? You want my other ear to be ear death?" Now of course, the ear death part is adorable. But also, I've never said anything remotely like that. But still the same. I see it's affecting the kids. So I'm hoping Monday resolves something.
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Good luck tomorrow; hope you get some answers.
Jan
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For years I had neck/shoulder pain...like a crick in your neck...nothing horrible, just annoying. (thought it was stress)
My lower eyelid twitched. (stress again)
I had symptoms of IBS.
I had 2 bouts with unexplained dizziness that just went away on their own.
I was tired all the time, exhausted! (I had small children)
Put it all together along with facial tingling 4 months before surgery and debilitating vertigo 3 months before surgery...= 4 cm AN compressing 5 cranial nerves and the brain stem.
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Good luck today with your MRI scan. I will be thinking of you and hoping for good thoughts. Hopefully they will get back to you soon. My called me with results the next morning. You are early enough today that maybe they will be read quickly.
God Bless and keep us posted.
Susan
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Well, I'm home and have been for awhile. The cyst I have in the nasal area looks huge! Like really tumor-like. I'm hoping someone calls me soon to tell me what's going on. I picked up my own copy of the disc so I'm just captivated by the images. God is so cool with how He makes the body. So neat! But anyway. Of course I can't tell a thing by me looking at it. But I do have A LOT of white spots. Not sure what that means. But my cyst (they already told me I have one by the CT scan last week) looks REALLY big with this mri!
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oddly enough, i didnt have any symptoms at all. I hit my head and went to the ER for stiches. They did a CT-scan there and noticed "something odd" and the rest is history.
A week later I was diagnosed with a 3.5cm AN compressing my brain stem. I really hadn't ever noticed a single symptom.
That is....wow....quite a story! I'm so sorry you went through all of that. :( Do you feel blessed you unfortunately had to go to the ER that day?
I always tell people that the damn bungi cord (that cut my head open) saved my life. Weird how things happen, but thank goodness they do!
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YAY! NO AN according to my doctor. :) He said that I do have a really large cyst in the nasal area. But no tumor! *breath of relief* He said that he still has to figure out what is causing my pulsatile tinnitus but he's referring me to St Louis for that. I took some great migraine medicine and it seems to help with my balance issues. Going to get a hearing aid for my nerve damaged ear. And I got glasses for my eye pain. At least I don't have a tumor. *grinning* Thanks for putting up with me, you guys!
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I always tell people that the damn bungi cord (that cut my head open) saved my life. Weird how things happen, but thank goodness they do!
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You were cut by a bungi cord? Oh goodness gracious!!!
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Great news! I hope the rest of your health issues are quickly relieved!
Tod
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WOW!!! This is incredible news. I'm so happy you don't have an AN.
Thanks for updating us,
Jan
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Stand ~
Congratulations! I'm delighted to learn that you don't have an acoustic neuroma. Although you still have some medical issues to deal with, you appear to be on the right track. Well done!
Jim
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Thanks, you guys. I'm not quite sure where to start. My dizziness and nausea is getting the better of me. Now to add to that, the lights in WalMart are becoming such a problem, I'm having staring episodes. My head feels really strange. I stare. I'm clammy. I can't move or talk. I can barely think. After about a minute, I can blink and move again. *sigh* Not sure where to begin...
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I always tell people that the damn bungi cord (that cut my head open) saved my life. Weird how things happen, but thank goodness they do!
You were cut by a bungi cord? Oh goodness gracious!!!
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First of all, congrats on the great news!
Secondly, yes, a bunji cord did me in. I was moving into a new house, loading up a truck and one of thoe bunji cords snapped back and nails me in the head. I've never seen so much blood in my life. I went to the ER to get that stiched up and that's when they saw something on the CT scan. It's crazy how it worked out. If you're interested in reading the whole story, the link is in my signature below :)
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Last September I started out with mild hearing loss, tingling on the left side of my face. As time wen on I felt fullness on the leftside of my head and dizziness when I stood up. Finally near total hearing loss, balance issues, vertigo, and loss of taste. I was diagnosed in June and had surgery in August.
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Thank you guys for all being so kind as to responding to my messages on here when I have not been diagnosed with anything. As stated in earlier posts, I just have a lot of symptoms of it and my ENT is sending me for an MRI. But did any of you have one-sided pain? A for instance, the right side of my face has been having pain all year. It comes and goes. But it will originate on my cheek bone and will radiate up to my eye (making it weak-feeling) and will then radiate to my right temple and right side of my forehead. If it gets really bad, it goes to the back of my head. My right cheek and especially cheek bone feels VERY numb. A numbing throbbing sensation.
HERE'S MY QUESTION: For all of YOU GUYS, what were your symptoms before surgery?
Balance issues (sometimes severe) for about a year...attributed to stress, constant tinnitus for about 2 years, finally a full feeling in the ear that a change in allergy medication did not alleviate. ENT found no fluid, tested hearing, and found a 20% loss (I never noticed that) in affected ear for no reason, ordered the MRI and there it was--2 cm. Surgery upcoming Nov. 30.