ANA Discussion Forum
Archive => Archives => Topic started by: EriKatLyn on April 27, 2006, 10:23:39 pm
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Hello! I am a "newbie" to this site. I've been having what all the sites list as "typical" symptoms of an AN, I am in the process of getting an MRI done. I was just curious how everyone discovered their AN and what their journey has been.
-Erin
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Welcome EriKatLyn!
I turned 40 this year and had to have my first mammogram. While I was at it, I decided to go have a hearing test just to see how much hearing I had lost from damage to my ear from all the concerts I went to when I was younger. I didn't want a hearing aid yet, but wanted to know just how protective I should be of the hearing I had left. I got sent to the ENT and for a MRI just to "rule things out" and I can't believe I was actually joking about making sure there was "nothing growing in my head". Surprize, surprize. I've had hearing loss for 10+ years and tinnitus since my rock concert days. Now I'm looking at surgery for something I had no idea would be there. Crazy where life leads you.
Please ask us anything...there are a lot of pre-procedure and post-procedure folk on here. There are lots of options depending on size and location and opinions and experiences abound.
When is your MRI scheduled? Does your doctor think you may have an AN as well?
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Well I've had my symptoms for about a year and a half. They've gotten worse in the past two months (?), I've been in and out of the Dr. office (well I am actually treated by a nurse practitioner). We thought maybe it was low blood sugar- was watched and treated for that, nothing got better. Thought maybe it was migraines, again treated and no improvement, thought it was allergies, again same thing, never any improvement. I had a spell three weeks ago where I was basically bed ridded because of dizziness/vertigo and vomiting, and after that I'd had enough. At this point I should say that my NP (nurse practitioner) really hasn't been that helpful. I've basically been fumbling trying to find reasons for my symptoms hence all the random things above (migraines, hypoglycemia...), so I went in and demanded that I go to an Audiologist. I have my BS in Speech Therapy so I've taken several Audiology courses, and I thought that maybe this was an inner ear problem ( I don't know why I didn't think of something like that sooner), but I went in and I have mild hearing loss in the high frequencies in both ears, with the left being significantly worse. I had my hearing tested in Dec 04 in my college clinic and everything was fine then. At that point my AuD asked if I had ever had an MRI, no, and he mentioned that he thought it could be Meinure's Disease, or there was a small chance it could be a tumor. He sent me to an ENT, that was the worst experience of my life. I walked in and the ENT asked "why I thought I should be there" and so I told him about my symptoms and how I thought it was an inner ear problem, and the ENT laughed and said "so why do you think you need my [/i help? So then I proceeded to tell him that my NP and my AuD both thought it might be inner ear and they wanted some balance tests and a vestibular work up done, to which he responded "well they aren't real doctors so how would they know". I turned red, and I was just baffled. Here I was hoping and praying that the ENT would be able to find something and at least I would know why I was having my symptoms, and he was basically telling me that there was no basis for my symptoms and he also mentioned that he thought it was " in my head", psycho somatic. I got so frustrated I raised my voice and said "well what can you do for me?". He then took his otoscope look in my ear, said the ear drums were fine, there was no fluid. Then he added that it was either psychosomatic (which I am almost certain it is not) or a tumor, and with that he got up and left the office. I was so frustrated I just started crying. I went back to my NP's office and told them that I wanted an MRI, and then said that my NP wouldn't schedule one until she got the "report" from the ENT. That was on Tuesday.
I have no idea if I have an AN, my symptoms are the "typical symptoms" but I am getting no support from any of the medical staff so I am at a loss. The only reason I even know what an AN is, is because I typed my symptoms into webmd and AN came up. I think I am getting ahead of myself, but I feel like no one else is being proactive so I have to be. There is some reason that I have a new hearing loss and tinnitus, I'm only 24, it's not typical, and the vertigo and dizziness. It's gotten so bad that I have to take a meclizine before I drive anywhere. I NEVER used to get sick when driving a car.
Well I've written a book here, guess I was venting a little bit, but it's just so frustrating.
Thanks for the reply!
-Erin
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Hi Erin,
Feel free to vent anytime.I was misdiagnosed for many years with vertigo, possible migraines etc. I was told a cat scan had ruled out anything major so I just put things on the back burner. I did have significant hearing loss and bouts of vertigo. At times I was scared of finding out.
Then.. I was rearended in a car acident and ended up with neck/back injuries. While doing a MRI of my neck they found the tumor. I was sent to a neurologist, then an ENT and then a neurotologist.The neurotologist along with a neurosurgeon removed a 3+cm An with the translab approach 8-2-05. The surgery was 8 hours and the tumor was wrapped around my facial nerve but I have no facial damage. I did lose the rest of my hearing on my an side and am still dealing with a few balance issues. I feel if I did not have the previous injuries I would be farther along the road to recovery.
I know this is a scary time but try to remain positive. There are many of us with great outcomes. There are also a lot of great people here for support and answers. We will add you to our prayer list.
Take care and keep us posted,
Lynn
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Erin,
It's good that you're having the MRI done be because it will tell you what you need to know. You can take things from there. I suffered for years with double vision, increasing deafness in my left ear and then, really bad equilibrium problems before I was able to get an MRI.
I'd see various doctors including chiropractors and audiologists hoping to find a solution. All the doctors would tell me the same thing: "Get an MRI", it's the only test that will really shed light on what is going on in there. When I finally did get one, the phone was ringing off the hook the next day when the results came in. The next day, I was hooked up with one of the best neurosurgeons in the world at Mass General in Boston. Things can work that fast when you make the right moves.
Take care, Paul
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Hi Erin, I'm a police detective. In spring of 2002 I noticed sudden hearing loss in my right ear after a firearm was discharged close to my right ear in a trainging accident. My ENT thought the hearing loss was due to the accident. 2 years later in spring 2004 I noticed balance problems which I mentioned to my audiologist during a check-up. My hearing in my right ear had also gone from 50% to 15%. My ENT sent me for a MRI and on July 1st 2004 I was told I had a 2.2cm AN. Successful surgery was on October 20th 2004 at Hinsdale Hospital, HInsdale, IL.
Thats my story and I'm sticking to it, lol.
Good luck in your journey. You have found a wonderful site with everyone more than willing to help and share their experiences in the hope that it will help.
Dave Skaja
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I had been having symptoms for a few years and had excuses for all of them. I started losing my hearing and laughed it off to age. Then my boyfriend had a snowmobile accident, and had to have surgery, so while at the hospital for him, they asked him if he had any problems with acid reflux, he said I don't but she does and pointed to me. So I basically was guilted into going to the dr. for my acid reflux problems, and while there mentioned that I had some hearing loss. My PCP checked my hearing and I had 90% loss in my left ear, he immediately scheduled my MRI. The rest as they say is history.
Denise
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Hi Erin. I'm sorry the ENT was such a jerk! I had dizziness for about 6 weeks three years prior to diagnosis. The dr kept saying it was labryinthitis and that it would go away. I even went to an ENT who never did give me an answer. The dizziness went away. Fast Forward, in Feb 2004 I noticed tingling in my right cheek and then I got tonsillitis. I never felt right after that. For the next month I was in and out of drs offices, then the dizziness started and it was bad. It was so bad one day that I ended up in the ER and we had a CT scan, but I was told I just had sinusitis. After being told it might be the labryinthitis again or it could be MS (hated that doc), or allergies or sinus....I finally saw an ENT. He noticed "something" on my CT and ordered the MRI. That "something" was a 4 cm AN!
By the time of surgery I had been having constant dizziness for 3 months and I was unable to eat hardly anything because it made me nauseous. Turns out the tumor was pressing on the nerve to the stomach and causing distress.
Good luck and make sure that MRI is done WITH contrast. Ask for your films when they are done and take them to your regular doc. Get answers quickly. The not knowing was worse than the knowing for me.
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I Erin...
Geesh I hate when doctors say it's all in our head and we need professional help! Especially when they do not do the test needed to back up our complaints! (wanna me to go rough him up? ;))
First MRI W CONTRAST is a must! If they do not do the contrast often times they don't see the tumor if that is that probelm.
Second: KUDOS for being proactive! If I hadn't been proactive at the point I did I'm convinced I'd be dead. So always speak up you know as much as the doctors! We took a sheet from my sons symptoms for the diagnosis we (him and I) thought he had and were told NO, it's all in your head! I found another doctor who listened, ordered the correct test and got him diagnosed. There are docs out there we just have to find them!
Third: YOU ARE NOT ALONE. Even though right now you might feel you're alone and why me. Please know this is a wonderful board of support and we will answer, listen, cuddle, joke, and answer any question you have IMO nothing is redundant, no is too silly. The only question that is a problem on here is the question not asked. THe one not asked can be the ones to help you the most if you have the answers from someone.
Please keep us posted. We hope it's not an acoustic neuroma but if it is, heck even if it's not, and you need support you are in the right place! You are not being psychosomatic you know you better than anyone else don't let them get you down!
Keeping you in my prayers!
Michelle
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The first ENT I saw also said I had Menieres and when I asked if it could be a tumor,he said I just get anxious. A year and a day later I had a 8 hr surgery for my "anxiousness" and had completely lost my hearing without realizing it! I eventually did get an apology out of him as had to take an elderly relative to see him. He was the same way with her about being anxious and she was not an anxious type lady. He said come back if had any sudden hearing loss which I never did. I have told every resident ENT this story, as have come across several with my surgeries. in hopes of it being a learning lesson to them on how not to treat patients. I am aware they have similar symptoms but there is nicer ways to put it.
Cheryl R.
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Wonder if we were dismissed because we were female? I know my complaints were dismissed and it wasn't until I got nasty that they actually did the mri but by then I had lost my hearing and my symptoms were a lot worse.
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I wouldn't be surprised if he was a jerk because I was female. While I was there he was bellowing for his secretary to get him something, she came in and what he needed was two inches from his feet. He made her get down on her hands and knees to get it for him! And the worst part was she is 8 months pregnant, and he made her get down on all fours, I couldn't believe it.
Right now I am not scared per se, I just want to know what it is. At least if I know I can deal with it. Like I said I just want to know, I especially would like to know because I don't want my hearing to start getting worse.
I just want to know! :o
I think I may go to my Nurse practitioner to see if I can get an appointment, and just tell her I want an MRI, the ENT said I should go to a Neurologist (the nearest one is 2 hours away) and I know it would take forever to get in.
This board is great, cause at least now I know that there are other people with symptoms like mine and I am not going crazy!
-Erin
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No Erin you are not going crazy and it's not in your head!
I'd also hope you'll see someone else for treatment instead of mr ent control freak!
Hopefully you'll have some answers soon!
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Erin....keep being proactive. The average ENT does not have experience with AN's...the ENT that sent me to get the MRI said he sees an AN pop up about once a year or so...and that's in a pretty dense urban area...not even in the boonies. If they're still stalling you, go find another ENT to get a second opinion. I would not go back to that guy.
Also, make sure they order your MRI with contrast.
Keep up the fight, and I hope you get some answers soon!!!!!!!!!!
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Erin, definitely call the NP and ask for the MRI with contrast. Keep bugging her/him until you get it. Then bug them to get the MRI. Then bug the MRI place about the films and get the followup appt right away.
Once the ENT ordered my MRI, the office girl couldn't get me in for over a week. I didn't like that and asked where else I could go to get it sooner. I got an appt for 2 days later, a Saturday. The MRI tech was so great. I asked for copies of my films for my doc and I just had to wait an extra few minutes.
I was scheduled to see the doc on Tuesday. I called Monday am and asked for an appt that day. I had to drive to his "other" office but they got me in. My ENT was great, he had trained under my surgeon so he made a personal call to him for me and got me in to see him the very next day. My surgeon usually didn't see patients on that day but made an exception for me.
Continue putting the pressure on....I have defintely learned that if you push you can get what you need but if you sit back, you will wait and wait and wait.........
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I remember walking to work and not being able to stay on the sidewalk. Standing in line to punch out and for some reason falling back and then thinking I was a nerd, and wandering why I did that. Things like that for 6 or so years before I went to see a doctor.{never a headace though} I had a sudden loss of hearing and a cold numbing feeling in the back of my tongue. So off to the doctor I went. He said to close your eyes and try to walk. I could'nt do it at all. It made me terribly dizzy. If I only would of tried this at home I would of known there was something wrong. the cakes...I had a reason for being so clutsy.
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I had a headache on my right (non AN) side for about a week. My doctor offered an MRI, just to reassure me that it was nothing. Well, it was something, but every doctor says my AN was an incidental finding. I had no symptoms except for a slight distortion in my left ear in a loud room. After the diagnosis, I did feel fullness in my ear, but I'm sure I wouldn't have noticed it otherwise. The weird thing is that I became convinced that I did have a brain tumor (of course I was imagnining the worst kind). I kind of feel like the headaches were a little sentinel that I should get stuff checked out. So, chalk me up to dumb luck!
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stumbled onto it... had MRI for one reason, they found 2 other reasons (my AN and Chiari)... go figure, eh?
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How does everybody write that little postscript at the end of their postings that tells the size of their AN and how they had it treated?
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I was one of the lucky ones. I went to my GP with ear fullness, hearing loss and occaisional migraines and he ordered a hearing test the next day followed by an MRI the following day. What is up with these docs who won't MRI people with the most obvious symptom--unilateral hearing loss. It doesn't cost them anything or inconvieneince them in anyway!!
Another goody--saw on network news yesterday that 42% of American workers have no health insurance--more than double from 1997. This is a national crime. >:( >:( >:( >:(
Captain Deb
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Dowdog,
If you go to your profile page and edit it and put the information under "signature". It's so helpful to have that, I'm so braindead most days that if it's there, then I know I'm not asking the same questions over and over.
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I went in December 2004 to have my ear cleaned out, because I had a little buzzing going on in there and I thought I probably had wax build up. My husband has that problem, so it made sense to me that was the cause. Turned out not to be the case. Then I developed the fullness in the ear (it needed to be "popped") and the muffled/echo crud of partial hearing loss. My doctor sent me to the ENT. He pooped around with allergy solutions, put tubes in my ears, and finally sent me for a CT scan. It might have been found then, but he didn't order it with dye contrast. I was told I "had no tumor". HA HA Before that I'd had the hearing test and it showed that my hearing had declined in that ear. It wasn't until I experienced facial numbness and told my family doctor that I was sent to a neurolgist and she oredered the MRI, with dye contrast. This was just this last March 13, that I learned what was happening to me. I just had, on 4/18 Gamma Knife radiosurgery to nuke it to kingdom come. I am 60 and since my AN wasn't pressing on anything vital or extra large, a non-surgical approach was probably best for me. I think being young and strong helps to get through brain surgery! I don't know how long I'll be visiting this site, but it has been a comfort to "talk" to other people and to get some encouragement on this journey none of us ever thought we'd take. I told somebody it was kind of like the Road Runner Cartoon. If ya all remember that one. The railroad track is empty for miles and miles and miles, and the Coyote takes a step - BLAM. I sometimes feel like the Coyote.... ;D
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Because of my job (prior military...USAF), I was required to have annual hearing exams (I worked around aircraft...helicopters). Everyone I knew had some form of tinnitus from working on the flightline, so that wasn’t a real shocker. I did have a couple of “strange soundâ€? days where the tones on the telephone when you dialed a number sounded weird…but I just threw cotton in my ear and pressed on thinking it was an ear infection. But one year I kept failing my hearing test for my left ear. I had a band of hearing that just wasn’t there anymore and it was found during my hearing test. I scored almost exactly…three times in a row (failed the test with same exact results).ÂÂ
So…I was referred to ENT, where they performed a bunch of tests. The doc came up with inconclusive results. So from there I was sent to see a specialist, who decided to do further tests and have an MRI. I found that I had lost 90% of the balance function in my left ear…and didn’t even know it. My right ear had compensated. The MRI showed it…plain as day.ÂÂ
So for me I really didn’t have any warning signs.
Gary
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Erin: For many years I suffered major headaches and insomnia, was not properly "worked up" by a neurologist and treated as "psychosomatic" for a number of years. When I lost the feeling in the left side of my face I was sent to another neurologist who thought I had MS and it was through testing for this the AN was found. My symptoms (that I was aware of) severe headaches, insomnia, numbness of the cheek area of my face along with some other things that I think may have been related but aren't typical AN symptoms. When the testing was done a high percentage of hearing loss was noted but I was not aware of this (didn't use the phone on that side etc. so hadn't noticed and I thought everybody had trouble hearing in bars!).
Kathleen
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We found mine July 2005, but it was in Oct 2004 that I went to the doctor because I had a "buzzing" in my left ear. The doctor suggested a hearing test, then the audiologist after seeing slight hearing loss suggested that my doctor set me up for an MRI to just make sure that every thing is ok because "tinnitus on one side may sometimes be indicative of an acoustic neuroma, which most likely you wouldn't have, its very rare...." and that was the first time I heard the term acoustic neuroma.
I put off having my MRI, because I thought I probaly had tinnitus because I was always around loud music for years (worked in the music industry), but then I was getting odd headaches, only on one side, sorta felt like when you have a ponytail for too long or a hair clipped up too long. Mentioned this to my new doctor when I went for a physical and he sent me for MRI....and here I am today...
Had CK 10/2005, feeling really good, tinnitus a bit louder and headaches only when I am overtired, or stressed (like when my husband invites 16 people over for a "BBQ" and gives me one day notice!) :0
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SuzeAn shame on husband!
Funny we were neck in neck with complaints and diagnosis. I'm bummed I didn't get an option of ck..was told mine was too big at 2.5 :o( Funny how treatment options vary by states.
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I'm still in the process of waiting and watching to find out if I do have AN's. If so, they're bilateral. They are still so small (2mm as of Jan. MRI) the Dr's aren't sure what they are even though they call them AN's when we talk. I had an ENT do a hearing test in Jan. too, right side is way less than left, which is about normal. Left side is also the loudest as far as my tinnitus. Last year my Dr sent me to another place for a hearing test, I think it was aboutthe same result as in January. They called me a couple days ago and asked if I wanted to comein for another exam. I'm pretty sure I've lost some hearing on the right side since the ENT test in Jan., but I've been putting off seeing if I'm right. Part of me doesn't really want to know, but since they called me, and it's free, I'm going to go in next Tuesday and see if there's any change. ;D
Mark
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FREE :o Heck I'd go too!
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BP,
yep, free is my favorite price. It's not a bad test either. They do the normal tone stuff, picking voices out of background noises, and a few others, but I didremember what thay are. With the headphones on I find it pretty easy to hear voices in background noise, in real life at work I have real trouble. ;D
Mark
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I noticed that I heard less in one ear than the other when I was on the phone. I went to a local doctor who had me take decongestants. I didn't really pay much attention to it. Two months later I decided to see my local ENT. He had me take a hearing test. I had a 12% hearing loss in one ear. He told me he wanted me to get an MRI to check for a tumor. When I read his report afterwards he had noted that the MRI was to check for an acoustic neuroma. I also had the contrast done. At this point in time I was still unaware that there was any problem. I figured he was just being safe. Next thing I know the doctor is calling me and telling me that I have a benign brain tumor called an acoustic neuroma. He made an appointment for me to see an AN doctor two days later. I feel impressed that he found it so quick since I doubt he sees very many in our small town. Surgery was a month after that. Recovery has been another matter...
Jean
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DUI arrest. You'd be amazed how drunk you can appear to be with a 4cm AN that's causing signifigant nystagmus.
Tom
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Tom,
How long did your nystagmus last? Did you have before or after treatment or both? I also had nystagmus following treatment for a 6cm tumor.
Best to you
Chet
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I've had it post sugery after 8 mos it's better but....still there. How bout your tom and chet?
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Mine lasted about a year post surgery. It's been awhile now, almost 9 years. As I understand it, my nystagmus was a neurological response.
Best to you
Chet
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My symptoms were sudden. Tinnitus all of a sudden and a suction blocked sensation on my left ear. Within 2 days went and saw a GP. Tinnitus was loud. He said not to panic, wait and see if it goes away and to call in 2 weeks if it didn't. That was a friday. That weekend it was consuming me. Tinnitus was so sudden and weird, i'm not generally a sickly person, felt like there was something really foreign going on. Went and saw another GP on the weekend. She told me to relax, it's nothing, millions have tinnitus. On the Monday was complaining to a friend about the tinnitus driving me crazy. She called an ENT friend of hers, got me in on the Tuesday. He tells me I'm too young and healthy to have anything seriously wrong, but there's always a chance. Referred me to an audiologist in 2 weeks. Tinnitus was driving me crazy, I made the appointments in few days. I could see on audiologist's face that he thought there was something wrong. Back to see ENT in few days. He tells me hearing on one side down in the higher frequencies, not a big deal, scheduled me for an MRI in two weeks. Reassured me nothing would likely be wrong, but we'd do the check just in case. Couldn't wait 2 week. Rang many radiologists, got into one the next afternoon with my referral. Was nervous all day. Thought there was somehting wrong. That afternoon MRI done. 3.5 cm AN. Hmmm, ENT little bit surprised. Can't complain at all though - he was great, never dismissed my complaint, he truly thought it wasn't likely to be anything serious, but he was very professional and cautious and referred me for thorough testing. I wish all doctors were the same, he was great.
Yes, your symptoms do sound atypical - but the thing about ANs is that they go misdiagnosed in many cases because the symptoms really can relate to so many other less serious things. It is rare, so you can understand that most ENTs will not assume that hte likely diagnosis is an AN if there is so many other more common explanations for the symptoms. However that is no excuse for not exercising caution and referring a patient for an MRI if symptoms remain unexplained. I recall getting into a false sense of security when I was researching on the net pre-diagnosis and I read one ENT surgeon's views that MRIs should not be ordered for AN investigation unless patient has severe dizziness. I did not have severe dizinness. Naturally I dismissed that as a realistic diagnosis - didn't really help the shock factor post MRI.
I think there is just as much chance that you don't have a tumour (in my humble opinion) and I will be saying a prayer for you hoping that you don't. Please keep us posted. I pray that your MRI comes up nice and clear.
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Hello! :)
I just joined this group tonight. I am recovering from my second brain surgery. The first one was a meningioma, and when I plateaued in getting my balance back completely, further investigation located an acoustic neuroma thru an MRI. This AC operation took 6.5 hours and I am recovering well. Surgery was on 2/16/06.
I wanted to give you the support for your "pressure pain". That part of my recovery seems to have passed. I do have sensitivity and numbness on the left side of my head (over the area of my stitches) that acts up when I am tired, or when I've eaten foods that start-up these sensations. So, through a process of elimination I have found I needed to avoid sugars, coke, catsup, honeybutter, certain cerals with sugars or honey, Mrs. Butterworth's pancake syrup, chocolate, chocolate mixes for hot chocolated, etc. Avoiding these ingredients over a period of time lessened the reoccurrence; and the good news is: After a period of time I have dared to try a tiny bit of a food that was on my "Avoid" list and only a small amount of reaction, or no reaction occurred. I hope this information may help you recover more comfortably.
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Welcome Diana,
Sounds like you've had a tough time of it. I hope you're doing well.
You're a more disciplined person than I am to be giving up chocolate. We all have to adjust to many AN and AN treatment effects. But there is no way I'm giving up chocolate. 8)
Regards,
Rob
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LOL I had to give up chocolate too...made me feel so much worse.
I think giving up soda was harder! I'm so sick of water!
Welcome to the group Diana..so sorry you had to join us!
Sounds like you're doing great for your surgery being just a few months ago.
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Diana--sound like you are reacting to high fructose corn syrup--which doesn't metabolise like regular sugar. I hope the FDA takes that stuff off the market soon. It causes diabetes in children and adults and prevents a certain hormone from telling your system that its had enough to eat. God knows what it does to us neurologically. There are quite a few tasty chocolate things on the market that don't have it, though.
Good Luck with your recovery!
Captain Deb
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I had sudden hearing loss and a plugged feeling. Tried several ear wax removal techniques with no success. Call a friend who is a ENT and they made me come in right a way. Was told I had nerve damage and hearing loss that was probably permanent. I had 80db loss and 65% SRT in right ear. Was sent for a MRI the next day to rule out the vary rare tumor. Got the call 6-1-05 diagnosis 4mm x 4mm AN, 9days from 1st symptom to diagnosis. 6th month MRI showed tumor at 5mm x 5mm. In the last year I can add tinnitus, headaches and balance problems to the list, good news is hearing improved to 50DB loss and 68% srt at 6th months. Will be scheduling my one year MRI in the next week or so and I imagine I will be trying to finally choose a treatment option shortly after.
john