ANA Discussion Forum
General Category => Inquiries => Topic started by: Omaschwannoma on November 07, 2007, 12:44:57 pm
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I would like to start a survey on this forum of AN patients who know they had symptoms earlier than when diagnosed. Most AN's usually present with hearing loss, but I believe they present with other problems first. My thinking on taking this survey is in hopes doctors become better at diagnosing earlier before hearing is damaged.
Before reading my "symptoms list" I would like to say I NEVER had health issues (breast cycsts but that's all), did not take OTC meds, nor script meds, was never afraid of heights and balance was exceptional. I was in perfect health while sailing around the world (literally) until we returned to the US in 1991 where my health took a downward spiral for the worst.
Looking back on my journey I can remember "red flags" as early as 1991 (dx'd in 2004). My first "red flag" was in 1991 while at an intersection I had traveled frequently and suddenly couldn't remember where I was. Nothing looked familiar. My GP ordered MRI as he said could be brain tumor. This was not taken "with contrast" so MR was negative for tumor, tinnitus was on-and off. 1993, showed with "worst headache of my life", but was dx'd as allergic reaction to perm solution headaches continued on and off. 1994, severe allergies (anaphylactic-type reactions) headaches were now dx'd as sinus headaches. 1996, tremendous fear of heights, unsteadiness, extreme exhaustion (falling asleep for no reason) dx'd as "getting older" 40 years old, had rear-end collision now headaches were dx'd as whiplash. 1998, tinnitus was constant and dx'd with hearing loss due to one loud concert in my twenties, fibromyalgic pain, radiating pain in arms and hands (dx'd as stress). 2002, excessive saliva, facial muscle ached, biting inside of mouth, tongue and lip, drooling (pictures of me smiling didn't look the same). 2004, hearing loss and finally diagnosed. Had surgery January, 2005.
I really would like for other patients to avoid the SSD issue so perhaps on this forum we can shed light on how better to dx early on.
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Karen,
I wish I could really give you good answers on my behalf, but as you know, I have been dealing with multiple issues. I can share that since I had my pancreas diagnosis first but I was experiencing balance and leg weakness issues at the time... that is when my head MRI was done and I was dual-diagnosed with my AN and Chiari 1. I know the balance issue was initially attributed to the AN (as the leg weakness to the Chiari 1) but later come to find out that both share some same potential symptoms, thus, was not totally possible to determine which was causing what issue. But, at least my AN was diagnosed at its early stage, thus, choices of treatment options.
Hoping others will chime in as this is a terrific question presented by Karen. Would love to see what others have to say.
Phyl
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I had no balance issues. My one and only symptom of AN was diminished hearing. One day I was sitting at my desk at work when I suddenly realized that I couldn't hear very well out of my left ear. I figured it was a sinus issue and that eventually my ear would "pop" like it does on an airplane. I'd had this happen to me before when I had, or was getting, a cold so I wasn't concerned.
Time went on and I never did develop a cold and the fullness in my ear remained. I noticed that if I held a phone to my AN ear everything was muffled and I while I had decent word recognition, I really couldn't hear very well. I just figured it wasn't anything serious, switched the phone to my right "good" ear and just moved along.
I kept telling myself that I'd have the problem looked into if it hadn't gotten better in a week. The week turned into months and finally I went to my internist for a regular checkup. He asked if I had any problems, and I remembered to mention my ear. He thought it was probably wax buildup but could see nothing. He gave me some ear drops and we decided if the problem wasn't gone or better in 10 days I'd see an ENT.
Things didn't get better, so I went to the ENT. He saw nothing in my ear either, but did a hearing test. When the hearing test was compared to one I had in his office about 8 years earlier, it was obvious I had diminished hearing. He sent me for an MRI and the AN was diagnosed. From there I was referred to a neurotologist. The rest, as they say, is history.
Sorry for the lengthy response.
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Strange as this may sound, I remember two times circa 1995 when I experienced vertigo. Odd that I remember it, but there you go. I can remember lying in bed and feeling the room swirl around me. I thought I had "water in my ear", or something on that order I guess. It lasted a short time, as was true of the second episode. And that was that. I never had that again. But looking back, I do believe it was probably caused by my AN that I didn't know I was growing. Maybe not...but suspicious, don't you think?
You are lucky your ENT gave you an MRI so quickly. Apparently at my ENT's office they don't do MRI's unless you tell them you have issues with dizziness, which I didn't. So the CT scan I had didn't show the MRI and he said, and I quote, "You have no tumors." HA HA Guess I showed him a thing or two...an Acoustic Neuroma buddy - so there! :o
Sue in Vancouver
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Hearing loss was my predominant symptom. Balance, taste and pain issues came much closer to my diagnosis.
Jim
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Only symptoms I ever had was right sided hearing loss & constant tinnitus, for years. Never had balance problems pre-op.
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My first symptoms were ear fullness and occasional balance problems. Both subsided when I started experiencing facial numbness, tingling and twitching. My hearing remained perfect until surgery when my hearing nerve was sacraficed to save the facial nerve.
Cheryl
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My first "red flag" was in 1991 while at an intersection I had traveled frequently and suddenly couldn't remember where I was. Nothing looked familiar.
You're the first person I've heard mention this. This happens to me also. I attributed it to my age, too much stress, etc. Wonder if this is a common complaint with AN. But the symptom that got me to the doc was one sided tinnitis with diminished hearing.
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You know, looking back one can only wonder if certain things that happened were connected to the AN or not. In 2004 my first signs that something was wrong were balance issues that got much worse than what I had had a little of for a long time. When they found the thing it was small 5x8mm
Now about ten years earlier I went through a period of dizzy wacky feeling head, fatique,and just being confuse and dull mentally. I went to a neurologist that gave me the most through exam I've ever had and then he told me that I was giving him a lot of symptoms that he could not put together. I did have an MRI at this time but not with contrast( I tried to get a copy of this mri but they said it was more than ten years old and had been destroyed). Anyway I was working shift work at the time doing a lot of overtime and they came to the conclusion that I needed more rest and my blood pressure was a little high so they put me on meds for that. I gradually began to feel better and got on day shift where I did get more rest. Now I wonder if that could have been related to the AN but I have doubt due to the time involved.
Back to 2004 my only other symptom besides the balance thing was fullness in the head and tinnitus but it was mostly in the right ear and the AN is on the left also just a week or two before I had GK I started getting this swishing noise in my left ear but I still had good hearing.
A few months after GK my hearing was gone, my balance got better with time and is manageable. It is affected by how much rest I get, I have retired recently and get much more rest. I have not had any facial issues. The tumor is stable and I will get another look in Feb and that's will be a year since the last MRI. The previous three MRI's looked the same.
Hope my rambling helps, but I think what we don't know about AN's may be greater than what is known.
Rich
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The "hearing" dx vs "balance" or "other" is taking the lead as of now. As Rich states, "Hope my rambling helps, but I think what we don't know about AN's may be greater than what is known." is the reason why I started this survey. There is much they don't know about the intimate workings, connections, etc. of the brain and how each section has an effect on the bodies awareness and function. As has been stated before by "those in the know" headaches are not related, but look at other brain tumor symptoms and headache is an indication. Some "in the know" will even go so far as to say this isn't a brain tumor. Even though this AN develops w/in the IAC, these are nerves to the brainstem and nerves to the brainstem are, IMO, brain issues.
Don't have access to "old Mr. Wizard" to help answer my ramblings and maybe he's here on this site to clarify the intimate workings of electricity, nerves, brain input/output, etc. When the AN disrupts the "flow" of signal to hearing, balance, facial nerve, I wonder about the "flow signal" back to the brainstem. The interrupted signal could misfire along the pathway to the brainstem where other nerves intersect there and perhaps this disrupted signal is picked up by those other fibers. Isn't this much like electricity going through an uncoated wire where the electricity expands beyond the wire. The energy/electricity follows the wire, but is not contained IN the wire 100%. It has an energy field that can be felt if you touch it (live wire shock). Rambling here what's been running around in my head for sometime. Okay, my head hurts now. Guess it's time to shut down and go outside to pick weeds! Have a great day.
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my systems were 5 years before surgery I slept allot, incoherent could even remember how to run a copy machine, balance off I was falling a lot, speech impairment, then the last year was muscle numbness on my cheek, blare eye sight , and a feeling of something in my left ear.
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Thinking back...I've always bumped my right shoulder into the walls. My balance has been off for awhile...especially at night..I feel like I'm walking all crooked or drunk...LOL. Just 6 months ago I started to have ringing in the ear and the feeling of fullness. I have some memory problems.. it takes me longer to remember things. I had taste distrubance for about 5 months but seems to be ok now. I am going in for CK here soon.
Mindy
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I was diagnosed with an Eustachian tube blockage in 2005. Decongestants cleared it up. In the summer of 2006 I noticed that I would occasionally be off balance when turning. Nothing major though.
In Oct. of 2006 I awoke in the morning deaf in my right ear. That led to my AN diagosis in Dec. 2007.
Dan
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I had balance issues sudden black out spells sharp pains in the ear. The pain in my ear wasn't in the ear canal (that came later) but just above the ear canal. I went through many tests but no MRI. The doctor said I had benign positional vertigo. Then many years later the plugged ear came on and that’s when an ENT scheduled an MRI
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Does anyone else experience ear pain on the side of the their AN-- occ stabbing ear pains that come and go??
(associated w/fullness and the usual tinnitus +/- hearing loss)? Thanks !
irene
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Yes I get that stabbing pain in my ear also.
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Irene, yes I sometimes get stabbing pains on my AN side that come and go. Not fun. I'm sure you will see as people reply that your not alone.
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Balance - 7
Hearing - 3
Other - 5
matti is in this category as not sure which came first "earfullness or balance", maybe together, but it was "facial" issues that brought about dx.
I'm putting goinbatty here because mentioned memory loss.
evelia experienced fatigue and balance not sure which came first so put in this column.
dantheman had earblockage and balance, not sure which came first.
Summary:
So far I have put those that have mentioned, ear/balance, at the same time in "other" column until clarified. "evelia" and "dantheman" respond if your recall can clairify better heading to be under.
As you know I'm trying to put together a compilation of symptoms experienced before the official dx in hopes of passing this information on to doctor/s to better inform them. This in turn will hopefully get a dx sooner before permanent damage is done. I appreciate everyone's help so far and if you suddenly remember something and want to change please do so.
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This is great that you're collecting this info. I'm pre-treatment and will have a translab at the end of Jan08. I started complaining about hearing loss and fullness in my right ear, vertigo and headaches 18 years ago (1989). Over the years and several audiologists, I finally was fitted with bilateral over the ear hearing aids and was continually told that my hearing loss was the result of deteriorating nerve damage. My right ear was far worse than the left and continued to decline over the years. Every time I saw a new audiologist, I would comment that it seemed like something was deep within my ear and that it even sometimes felt like the beginnings of an ear ache. I was always told that everything was normal and was never considered for an MRI.
Well, last Nov07 I had one of my severe migranes that sent me to the ER because I couldn't stop vomitting and was dehydrated. This time, they took a CT (because of the violent vomitting) and found something suspicious and said to follow-up with an MRI. They made it sound like it probably was just a defect in the scan, so I put it off until I started having balance problems. I kept walking into door frames and felt unsteady on my feet. It got to the point that even while standing still that I would fall to the left and when making sudden turns I'd lose my balance on a regular basis (everyday). Between the headaches and the balance issues I decided to finally see a neurologist in Oct. Beginning of new story, I was diagnosed with AN in my right ear which currently only has 10% useable hearing.
I'm really glad that I finally have an answer to why my body is acting the way it is, and I believe my hearing could have been spared if only they had been educated as to the early signs of AN.
Thanks for collecting this important info. Please keep us posted with your results.
~Firewalker
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What I thought was my first symptom was about 6 months before my diagnosis. I had facial numbness on one side. No hearing loss at all.
After my AN was found last January and I started to read about the different symptoms, I can look back and see that I actually had some subtle things that were probably a result of the AN. About 15 years ago, I started having sinus problems, but I had just moved to a new state with new things to be allergic to, so I was put on allergy medicine and just learned to live with the headaches that came every time it rained out. That's about when my insomnia started also, but I chalked that up to having kids and being a light sleeper because I needed to be able to hear them during the night. A few years ago, I signed up for a yoga class and just thought I was a clutz because every time I had to do anything requiring balancing on one foot - I'd nearly take out half the class! Same thing as far as the occasional bouncing off walls and furniture - just getting older and in too much of a hurry most of the time. It seemed a little strange since I was a gymnast when I was in high school and was pretty good at the balance beam and now I couldn't even stand on one foot on the floor! I guess I thought it was normal and happened to everyone. Now I know there is a very good reason I was a clutz all those years - and I think everyone in that yoga class has recovered from their injuries!
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Balance was definitely my first symptom. I started having problems in 2001. At the time my late husband was in hospital (to have another kind of benign brain tumor removed), and I was 'living' at the hospital 2+ hours from my home. So I just figured the balance problem was caused by stress.
I kept telling docs re my balance problem, although it wasn't horrible, just annoying.
But it wasn't until my hearing started to go that any tests were done. Tests resulted in AN diagnosis June 2007.
Dana
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Update:
Balance - 8
Hearing - 4
Other - 5
Some of these are difficult to place in one category when the symptoms happen to be all three at once, so I put those in the "hearing" column as it was an ENT visit that set the ball rolling. Don't know if this will work or not. But keep sending in your symptoms, thanks.
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Hello,
In my case I can say for certain that the first symtom was a large reduction in hearing in my right ear that occured August 2001 (over 3 years prior to diagnosis of acoustic neuroma). The ear seemed clogged up and I had a cold so I assumed it was from that. I was prescribed antibiotics which did'nt help so I decided there was nothing else they could do. I continued to work and drive with no problems until May 2004 when I noticed the right side of my face started feeling numb and my right eye felt like something was in it. Then I saw an ear doctor who said it sounded like an acoustic neuroma but I put off the prescribed MRI since I had no insurance. November 2004 I collapsed when a blood vessel broke due to the tumor. I was taken to the ER and diagnosed after a CT scan with an acoustic neuroma. Ever since Nov 2004 I've been dizzy to some extent, even more so after most of the acoustic neuroma was removed March 2005. Obtained SSI July 2007. Could'nt get standard SS disability due to provision in law that you have to work 5 of last 10 years, even thouigh I worked for 18 years. Seems I spent too much time in school. I was one year away from PhD when diagnosed.
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My first symptom was wierd imabalance issues, which I dismissed. Followed by horrible bouts of irretractable nausea and a few episodes of some very strange and dangerous vertigo situations especially in the shower, I just couldn't get a grip. But the real kicker in gettting dianosed was the visual migraine without a headache. I had great hearing. However, I lost my hearing 4 months after radiation. I hopw this helps, becasue I'm with you, I think there is alot for doctors and all of us to learn. I learn from this forum all the time, there are so many well educated and helpful people with great answers and great insite. Holly
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Thank you all and keep this going. I'll be back in a while to do an "updated" count.
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It has been so long ago my husband said I was more tired before my balance,
before everything any time I layed down on my bad side it felt like I had a pimple in the back of the ear that hurt alot when I put pressure.
eve
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Good Morning
Hope you all had a nice Turkey day! I'm too tired to shop so, just kicking back! Just wanted to add my two cents. My symptoms began with first a diagnosis of swimmers ear, which cleared up with drops, but the Tinnitis, and fullness feeling and noticeable loss of hearing continued. I was referred to an ENT who suspected a possible AN, and within two weeks the MRI confirmed the suspicions. As it turns out the Swimmers ear had nothing to do with the real problem, but helped draw attention to the urgency to find the problem!
Jackie
Guess I was "lucky" it didn't take months or years to find the problem, and I am sorry for those of you that had to endure all that suffering!
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Hi, I'm a total newbie to forums and hope I am doing this right...First of all I am "So Happy" to find this group! I have a 2.5cm left AN, diagnosed 8/07. My past history is I have had bouts w/ migranes, clutzyness since my 20's. I am 45. My first head CT was in my 20's...no tumor but I did have a allergic recation to the dye used. I have had intermittent bouts w/ vertigo (but mainly while Jet Skiing or Snow skiing/ Snow skiing is not an option any longer is was so bad).
Aprox. 1 yr+ b/4 the AN was found, I was in for a routine eye exam and my optic nerves were swollen. I was sent to an opthomologist/neuro. who ordered a CT w/out contrast...no tumor was found and I was diagonosed w/ "Psuedo Tumor Cerebri" (false tumor). I went through a spinal tap, diuretics & multiple field vision tests, was told to loose wieght!
Then in July I thought I had a wax blockage and tried the warm water ear syringe a few different times w/ no luck the after a couple weeks the ringing started which made me call my GP. She said the ear was clear & sent me to an Audiologist who found hearing loss on that side and sent me to an ENT. The ENT ordered the MRI w/ contrast and the AN was found. The tumor was not psuedo! If I had had the CT w/ contrast or the MRI a year+ earlier I would still have hearing & no tinetus (my balance I have been told is totally gone on that side).
I have a question for the group re: radiation and where FRS is available and who DR wise is good to ask for? I have seen about 5 or 6 Dr's and think I am leaning in the direction? My last visit ws to Dr William Friedman @ Shands in Gainesville FL, he dose not do fractioned. I lost my dad the end of Sept and that sent my world into a whole other direction... but I need to get back refocused on diciding what to do next? I was considering Pittsburg, Mayo in Jacksonville & Johns Hopkins? but then I found this forum so any help is appreciated...
Phyl, if you read this it may need to be placed elsewhere?? Thanks
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yenna, hi and welcome. Will start a new thread for you here in "Inquiries" so this doesn't get buried..... hang in there!
Phyl
Hi, I'm a total newbie to forums and hope I am doing this right...First of all I am "So Happy" to find this group! I have a 2.5cm left AN, diagnosed 8/07. My past history is I have had bouts w/ migranes, clutzyness since my 20's. I am 45. My first head CT was in my 20's...no tumor but I did have a allergic recation to the dye used. I have had intermittent bouts w/ vertigo (but mainly while Jet Skiing or Snow skiing/ Snow skiing is not an option any longer is was so bad).
Aprox. 1 yr+ b/4 the AN was found, I was in for a routine eye exam and my optic nerves were swollen. I was sent to an opthomologist/neuro. who ordered a CT w/out contrast...no tumor was found and I was diagonosed w/ "Psuedo Tumor Cerebri" (false tumor). I went through a spinal tap, diuretics & multiple field vision tests, was told to loose wieght!
Then in July I thought I had a wax blockage and tried the warm water ear syringe a few different times w/ no luck the after a couple weeks the ringing started which made me call my GP. She said the ear was clear & sent me to an Audiologist who found hearing loss on that side and sent me to an ENT. The ENT ordered the MRI w/ contrast and the AN was found. The tumor was not psuedo! If I had had the CT w/ contrast or the MRI a year+ earlier I would still have hearing & no tinetus (my balance I have been told is totally gone on that side).
I have a question for the group re: radiation and where FRS is available and who DR wise is good to ask for? I have seen about 5 or 6 Dr's and think I am leaning in the direction? My last visit ws to Dr William Friedman @ Shands in Gainesville FL, he dose not do fractioned. I lost my dad the end of Sept and that sent my world into a whole other direction... but I need to get back refocused on diciding what to do next? I was considering Pittsburg, Mayo in Jacksonville & Johns Hopkins? but then I found this forum so any help is appreciated...
Phyl, if you read this it may need to be placed elsewhere?? Thanks
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Hello Yenna,
My prayers are with you. I'm in Oregon so I can not help you in the sence of Doctor's but I'm here for any comfort I also lost my dad this Oct. 2 the day before my middles sons birthday and I also took it pretty hard but I had also lost grandma on the 3 of Sept. and a good friend on Nov. the 3rd So I know how you feel. Good luck on your journey
eve
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My first symptom was balance, followed by ear fullness. I was fortunate that my doctor ordered an MRI almost immediately. My AN was small and grew to 6 mm, with increased balance issues and slight hearing loss (in certain frequencies). I had surgery (middle fossa), retained my hearing and balance issues almost resolved. I occasionally get dizzy but not sure it is related to AN removal.
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1st red flag: 1992 Had physical for Voc Rehab (hurricane survivor) college scholarship diagnosed with SSD and told to get it chacked out. Of course I didn't--toomany rock concerts and scuba diving I figured.
2nd red flag: 1998--bad fall down in the ravine 2 miles from the car, thought I broke my hip or tailbone, balance felt just "off." I used to be a real gazelle. Is it age?
3rd red flag: 2002--stuffy ear that would'nt "clear" on a ride back up the mountain and finally went to the doc, oh and by the way, I'm having some nasty headaches, too. As a matter of fact I'm having one right NOW!!!! and zap, he put me in the hospital overnight and MRI'd me the next morning. Bingo there it was, the nasty lil bugger!
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
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Goodday All,
I had myself a very busy but exciting Thanksgiving. Drove over to cook dinner for my elderly parents day before turkey day for brothers, sister, friends, neices, nephews and significant others. WHEW! Then, my guy drove us home that night to rest up for the "day after turkey day" I cooked for our son who was working in hospital on turkey day. WHEW! I'm tired, brain tired too. Had good times and memories though. I am now dogsitting his bullmastiff Blu and soon to get one more (female) Zara that will arrive from overseas in a few days. YIKES! Hope they get along! Gonna have to use my cane to poke them a few times if they start "grumpin" at one another.
Here's the update:
Balance - 12
Hearing - 6
Other - 6
Thanks for adding to. Oh yes, 4, loved your story! Sorry bout the troubles and frustrations though. Yenna, I see you went to Shands at UF. I had my surgery with Antonelli/Lewis in 2005. Sorry can't help you with the proceedure tx you are looking into, but you will be answered by those "in the know". Welcome though. Vcschaub, was your doc a PCP? Wondering how he knew to order MR. Your story is the one that is a success due to your doctors "heads up" smarts. This is EXACTLY why I started this survey, and hope it can be presented to PCP's, ENT's and new med students as to the importance of early dx. I know funding isn't there for "rare" medical issues as, sadly, no $$ for docs/insurance companies so for them to find a cure isn't why I started this. It's to save the hearing nerve! I'm setting my sights low in hopes of helping more people hear better.
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Arushi-
The doctor that diagnosed me was in my PPO with Blue Cross. She is also my neighbor and she had treated my children. She is an ENT. That may have influenced the speed with which the MRI was ordered.
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I experienced an instantaneous loss of hearing in my right ear a few years prior to discovering the AN. I just wrote it off as part of aging. (not smart is what is what it actually was) Months later i had episodes of dizziness along with spikes in blood pressure(along with the dizziness) The most pronounced episode of dizziness was accompanied by tingling which began at my lower right jaw and quickly went up the right side of my face. I believe that this was caused by the interaction of the AN with my trigeminal nerve. I also had a few incidents while driving when I became unaware of my location which was very disconcerting. Headaches for me did not begin until about 5 months prior to my surgery soon after my most prominent dizzy spell. I'm convinced that all of the aforementioned symptoms were directly caused by the acoustic neuroma. Neal
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Mine was balance first, with a severe attack of nightime vertigo. I woke up feeling sick staggered to the bathroom, and collapsed with my face on the toilet seat. I didn't even know I was dizzy, because I couldn't lift my head at all. That was about a year and a half ago, it took a year to diagnose Menieres, and finally someone decided to do an MRI (previous cat scan was negative). The MRI showed a very small AN, so I will be heading to Phoenix next month to see Dr. Daspit/Barrows Neurological Clinic.
I have been dizzy almost every day for over a year now, and my hearing loss fluctuates and is actually a low frequency hearing loss (which is why they thought it was Meniere's).
Laura
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First bad bout with vertigo in 2000. Doctors chalked it up to stress from being a caretaker for my hubby. 2003 because vertigo bouts continue, my primary ordered MRI without contrast. Showed nothing. Remember commenting well at least I know I don't have a brain tumor. 2005 noticed hearing loss and went to ENT who suspected immediately AN, ordered MRI with contast and the rest is history.
mema
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I used to hear the wind whistling in my ear when I was outside, all the time on the side I eventually was diagnosed with an AN. I just used to think it was strange or related to all the sinus problems I've always had. Never really thought that much of it although I had mentioned it to my ENT and he didn't see anything when he looked in my ear. About 6 months (I'm guessing on the time here) after noticing the whistling I suddenly lost hearing when answering the phone one day which scared the poo out of me so I made an appt with my ENT. He did all kids of weird tests on me and lastly sent me for an MRI for something that was possible but a 1 in 100,000 shot. It ended up being that, an AN and you all know what happens next.
~Karen