ANA Discussion Forum
General Category => Inquiries => Topic started by: Nuttyneddy on February 12, 2014, 11:11:00 am
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I have read on here that at least a couple of people "self diagnosed" themselves before having an official diagnosis, and I'm interested to hear what the proportion of people is who suspected an AN before diagnosis, compared to the proportion for whom it was a complete (and unpleasant) surprise. What were your experiences? (Ideally I'd also like to know how many people suspected, but were OK. However they probably aren't still around here to reply!)
It came about because I was busily telling myself to stop worrying as if the incidence is 1 in 100,000 then I've got 99,999 chances of being OK. Then of course, I realised that 1 in 100,000 is for random people, not people with a suspected AN and it got me wondering what the incidence was of people sent for an MRI for this reason.
Thanks people :)
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Put me in the "complete (and unpleasant) surprise" column.
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It was a complete and unpleasant surprise for me!
Clarice
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Complete and unpleasant surprise. I knew something wasn't right with my hearing, but never considered anything like this.
Cathie.
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Complete and very unpleasant surprise found on MRI ordered due to a seizure,, quote the Dr " don't know why you had a seizure,, but you do have a brain tumor",,, gee thanks!! ???
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I had pain in my ear, sensitivity to sound and "fullness" like you're underwater for 8 months. It really felt like there was something in my ear, but the ENT doctor said not to worry - probably a virus or allergies, or TMJ.
It wasn't until I could barely walk one day 4 months later that I had an MRI. I had to switch doctors to get one ordered. And there IT was!
I was shocked - but at least relieved that it wasn't something worse. I don't like to worry unnecessarily, but am surprised they didn't just go for an MRI right away, as my insurance covers everything.
Now I'm a believer in getting tested sooner than later, just to be safe...
Wish I could have won the lottery with these odds instead!!
Ruth
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Thanks guys for the replies :)
Having read many of your stories, I feel very grateful that my GP did order the MRI as it seems that often there is a very convoluted route to get to that point. I'm not sure I'm as glad that I went googling to find out why he might have ordered it, I guess I was expecting "inflammation of the nerve" or something as a reason, not a tumour, but still I am impressed that he was so knowledgeable.
In the mean time I must apply the principle of Schrodinger's cat and assume that both possibilities are valid until we've opened the box. I have uni results due on 27th Feb too, it's the only exam I'm hoping to get zero for!
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I didn't know the name (ie acoustic neuroma), but the morning before I went to the doctor, I suspected he was going to tell me I had a brain tumor. Somehow, intuitively, I knew--which is why I started asking for tests in the first place.
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I am the one who wasn't surprised... I had hearing loss and fullness in my ear when I first went to the doctor. She told me I have nerve damage.. Then I saw another doctor as I didn't wanna accept that I had nerve damage and couldn't explain why I have it at such young age and in only one ear. That doctor said infection and gave me antibiotics. Had no ear pain and the antibiotics didn't help, so I accepted the fact that it was nerve damage. These doctors were all in another country.
I flew back to Australia and went to see my GP and was gonna ask to see a specialist cause the tinnitus started. The GP said it's fluid build up etc and I argued with him that I have nerve damage and I wanna see a specialist. He said "OK, I'll send you to a specialist, but he's gonna tell you the same thing.".. In the meantime the lightheaded started and these three symptoms led me to believe I have an acoustic neuroma. I went to see the specialist and he sent me to do an MRI and said: "Let's make sure there is nothing in there that needs to be removed." At this point I was pretty convinced I have a tumor and basically told this to my friends. They all thought I am crazy obviously.
Went to get the MRI. After it was done they gave me the CD with the pictures. Their faces looked worried so I knew what was going on. I asked if they saw anything in my brain and they refused to answer. They said something like: "You need to discuss it with your doctor." So I drove home and put the CD in my laptop and there it was.. the AN, which I knew what it is, cause I Googled for AN MRI images before the MRI. This was on a Thursday. The MRI center should have sent the diagnostic back to the GP and the specialist the same day, but they didn't.
So on Monday I went to see my GP which didn't get the diagnostic. Again, I argued with him that he needs to contact the MRI center as I think I have an AN. He said that those are really rare and he doesn't think I have one. Again, I insisted saying that I knew they are rare but the MRI image is exactly as the one with an AN. (also a surgeon told me later on that my AN is typical in size and location, so I guess it was easy for me to diagnose myself).
The GP then contacted the MRI center, got faxed the results and comes back to me: "You are right". At least since then he stopped arguing with me and he does everything I say haha (he writes me any referrals I need etc.)
All this happened during one month time or so.
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completely surprized. I had always been healthy, ate corectly and worked out 3 or 4 times a week for the past 20 years.
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Total surprise!
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Until my diagnosis, I was unfamiliar with ANs. But I knew that something was amiss. For years there had been a little voice whispering to me, but I didn't want to be paranoid. And I was in otherwise excellent health...
I'd had symptoms for too long, but they were all seemed minor & easy enough for me to dismiss-- I never really saw them as parts of a whole. I had the fullness, intermittent headaches, unilateral hearing deficits-- it was the sudden onset of vertigo that really sparked the conversation with my doctor. Thankfully, she immediately ordered an MRI. When she called me a few hours after my MRI, I told her I expected they'd find something.
By something, I meant something small. More watch & wait, and less ACT NOW!
Best of luck.
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Joanna, I am in awe! That's very assertive and proactive. The best I've managed is making an appointment with my good doctor instead of the lady doctor who told me I had fluid following an upper respiratory tract infection (which I had not suffered) and that I was peri-menopausal and should go on the internet and buy some cream :o (Yes, really - and in the absence of asking me any questions relating to any aspect of my cycle, or hot flushes or whatever).
Smedina I think it was the vertigo that made my doctor so sympathetic to my other symptoms - he saw me as an emergency so he knows how bad it was! It's strange how good we are at ignoring the fact that something is wrong. I might still be lying to everyone else, but at least now I'm being honest with myself.
Thank you all for sharing your experiences, it helps to have at least a bunch of random strangers who know how I feel!
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Put me in the self diagnosed category.
In 2004 I discovered a friend had an AN and that was the reason she was deaf in one ear.
Hers was 2cm. She was in her early 30's fit and healthy. She ended up having it removed later in 2004 Her operation lasted 12.5 hours her facial nerve was not saved.
3 weeks after the surgery she died in hospital from acute liver failure caused by an allergic reaction to the anaesthetic.
So fast forward to 2010 and I noticed reduced hearing in one ear and distortion and that plugged feeling. This came on suddenly. I knew it could be a lot of things but immediately thought of my deceased friend and an acoustic neuroma.
Thought it might have been wax at first, but then realised by pressing a vibration speaker against my skull... One of those laptop ones, that stick to the desk... That my hearing loss was sensineural and not conductive. Worked out that sensineural hearing loss was most likely caused by a virus, but I had not been sick.... That all happened within the first few hours of hearing loss.
day 2 I went to the GP.. The very same GP that first saw my friend.
We stared at each other, his jaw dropped and I knew that he thought it could be an AN from the symptoms and the way he looked.. He had been my GP for 23 years and I had never seen his worried look until now. I was sent for a CT Scan and a referral to an ENT.
The CT scan came back as inconclusive recommend MRI. However the boney wall of the IAC was very slightly thickened which is one way they pick up ANs on CT scans from the bone deformity
By now I am thinking 50:50 I have an AN or not..
Got the MRI, again opened up the envelope straight after the MRI and read the results myself...
When I read the results I was not surprised..
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That must have been particularly scary.
I'm glad from reading your sig that things seem to have progressed well for you. However did you stay positive and sane knowing that about your friend?
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Hi again nn/Fiona,
as you have probably gathered from my previous posts with you, I self diagnosed after googling my symptoms having had blood tests etc and ruled out other causes of the imbalance and dizziness and tinnitus. All my symptoms came on after reluctantly taking synthetic progesterone for peri menopause troubles. I have since read research stating progesterone can triple the size of an AN. I had no symptoms before that, apart from a short spell of blocked ear three years previous.
Re your original question, many people have appeared on here and not come back, presumably because they were not diagnosed with an AN. Hopefully you won't be, but pse let us know how you get on.
Alison x
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Seems about even then, between suspected and surprise. Even looking at other sites (deafness support, tinnitus etc) to see what others' experiences are I keep coming back to people with the exact same symptoms as me who turned out to have an AN. I don't know why I keep torturing myself with it - it's like picking a scab!
I also took progesterone (mini pill) for years (probably a decade) but stopped recently for other reasons. Glad I didn't buy the cream too!
What blood tests did you have? I have mine tested every six months as I take blood pressure tablets and the surgery likes to give their hypertension patients a six monthly check-up. I don't know what they test for, but they've never told me there were any abnormal results.
I did have a growth removed from behind my nose a few years ago, don't know if that's connected in any way? It was sent to histology and found to be non-malignant.
I promise to let you know how the MRI goes at the end of the month, not long to wait now. I just have to keep looking at the positives - 1. I am getting the MRI so will soon find out for sure. 2. It is not painful and 3. It is not making me sick (I am a lifelong emetophobe). Beats focussing on the incessant racket in my head! I am OK with the hearing loss/distortion so far - OH has to put up with subtitles if we watch TV (we don't actually have a set, but we watch the iplayer a bit) and he's being very patient repeating himself all the time! The rest of my family live far away so I've only spoken to them on the phone - that's easy if I use the good ear.
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Hi,
I had blood tests for everything they could think of, white cell count, kidney function, thyroid etc I was already anaemic through the peri menopausal bleeding which escalated with the progesterone. They thought I may have needed a blood transfusion, (luckily I avoided that). I was so dizzy and weak I had to get a taxi for the 5 min walk up the hill to my docs surgery. My pulse rate was 120.
My theory was the AN put on a growth spurt because of the progesterone, and my body went into meltdown. The ENT apt and subsequent MRI confirmed the diagnosis I was expecting having done my research!
Alison x
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That must have been particularly scary.
I'm glad from reading your sig that things seem to have progressed well for you. However did you stay positive and sane knowing that about your friend?
How did I keep positive?
Well I took a very proactive approach.
I wanted to find the best option.
When my youngest daughter was born, at 10 days old we self diagnosed a haemangioma (strawberry birthmark)on her eyelid.
This is a common benign growth that will normally disappear on its own by the age of 10.
However as it was on her eyelid there was potential for facial disfigurement and loss of the use of the eye.
If children don't learn to see out of an eye when very young they may never be able to use it.
At 21 Days old, 11 Days after we worked out it was a Haemangioma, and a growth that was doubling in size every few days, we had gone from GP, to paediatrician, to a plastic surgeon, and had it treated under general anaesthetic.
A simple steroid injection into the haemangioma was all that was required. But we got significant resistance and scepticism from the GP and Paediatrician as traditionally these things were left to grow and then diminish, and you copped the problems. The paediatric plastic surgeon had one look at it, and booked her into surgery the next day.
I did my research on Haemangioma's and it was obvious that the latest way of treating them was as soon as possible with steroids.
This practice is now the norm, but it wasn't 11 years ago and we had to push for it.
It was this experience that taught me how to get things done quickly with the medical profession.
I pretty much gave up work after I received the results of the CT Scan which returned the suspect result. Something I could do as I run my own business, and I left the running of the business to my managers.
I spent 14-16 hours a day 7 days a week researching AN's and what I considered was the best treatment.
I got access to the full medical articles through a friend.
Every few days I could tell my hearing was getting worse so I felt that it was a bit of a race against time to save my hearing too.
After 3 weeks I had settled on Cyberknife as my treatment choice. I live in Australia and neither Cyberknife or Gamma Knife existed in Australia at the time, so that meant going overseas.
When the MRI came back positive I started the process of finding a Cyberknife Treatment centre
I settled on the European Cyberknife Centre in Munich Germany who have treated around 1000 AN's
Dr Muacevic was my neurosurgeon, he is currently the president of the Radiosurgery Society.
He was brilliant... So was very pretty happy with my choice of neurosurgeon too.
Dr Muacevic was experienced in Microsurgery, Gamma Knife and Cyberknife for AN's
My hearing returned, and I still have what is considered normal hearing on my AN side, although its not as good as my good side. My balance has also returned, and I no longer feel fatigued.
I only spent around 6 weeks from first symptoms to having Cyberknife booked.
The moment I was locked in for treatment the weight of the world was lifted.
Not having that lingering doubt about what the future would hold helped a lot.
I had a solution and I was moving on and have not been concerned since that day.
I left Australia on Saturday Afternoon, arrived Sunday afternoon, saw Dr Muacevic on Monday Morning.
Got a High definition CT Scan and mask made. Tuesday morning got zapped.... single session CK 35 minutes treatment time.
Flew home Wednesday Night, (30 hour flight/travel) and arrived home Friday morning, dropped in on work Friday afternoon!
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@Alison, pretty much what they test mine for then, apart from thyroid function. I hope you got the rest of your symptoms sorted, it sounds like a lot to cope with on top of the AN.
@Paul, that's a very inspiring story, thank you. It makes me feel less guilty for spending time I should be studying (I am a mature student) researching ANs. I am studying a biology related degree, so I guess it's not totally off topic. It also gives me confidence to push for a diagnosis and resolution for my symptoms, whatever the MRI reveals. I am one of those people who doesn't like to make a fuss, my husband had to force me to go back to the doctors to sort out my hearing (he didn't have to force me for the vertigo, I thought I was dying LOL!).
Thanks everyone for your answers, it truly does help to know that I'm not alone going through this, and your stories are extremely helpful.
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Dear Nuttyneddy,
You must put me in the unpleasant suprise column as well but with a big caveat, having had a completelypainful and unpleasant brain event (AVM) happen to me once before in 1974, I was completely shocked and amazed that this brain event was happening again!!! To clarify if you read below in my bio I had one brain operation when I was 17 and then another brain operation this one for AN when I was 47 even though there were 30 years in between. Lightening, in my case, was striking twice!
The first one was so traumatic it involved several years of therapy both Speech and Physical Therapy that I was completely in denial 30 years later so much so that I consulted 14 times in order to avoid another brain operation! I could not avoid that however and went in for my AN subtotal removal in 2004.
I didn't want to believe it but I began with symptoms of vertigo and falling much earlier than I would have thought but I began denying these and thought I was just abnormally clumsy!
Mike
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I was completely clueless.
One day I realized I had fullness in my ear and my hearing was diminished. Figured I was coming down with a cold or something; wasn't concerned at all. A few months later I went to my doc for a routine checkup and only mentioned my ear "issue" as an afterthought. He gave me a Rx and we agreed if I had no change in 10 days I'd see my ENT.
ENT didn't see anything inside my ear but noted that my hearing test definitely showed a problem so he sent me for an MRI. I still wasn't concerned; figured it would show nothing and was very surprised when he called the next day to say I had "something" in my inner ear canal. He wouldn't say what the "something" was - although I pressed him about whether it was a tumor. He also told me he had "no idea" how big the "something" was. I guess he just didn't know how to tell me; kind of unbelievable coming from a doc I'd known @ that point for 27 years. He promptly referred me to a neurotologist.
After I scheduled an appt. with the neurotologist I went to the hospital to pick up my MRI films and a copy of the radiologist's report. Only then did I see that the radiologist was spectulating that I might have an acoustic neuroma.
Long story, short I opted for surgery. Had a great outcome - my only permanent "issue" is SSD and I now wear a BAHA. Life goes on - and it's a good life.
Things could have been a whole lot worse.
Jan
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I have been giving this a lot of thought, and I am glad that I have suspicions and that I've been researching while waiting for a diagnosis. That way, if the diagnosis is positive it won't come as a complete shock (I can only imagine the shock of going for what you thought was a routine test for an ear problem and finding out you have a tumour). If the diagnosis is negative then instead of being disappointed not to find out what was wrong, I will instead be overjoyed that it is not a tumour :D Win:win situation.
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I understand your logic, but we look at things in the opposite way.
In my case, I didn't spend days, weeks, or months, worrying about something that I might or might not have.
There's enough things to worry about in my life - so I'm glad I was clueless :)
Jan
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Hi Jan
Glad it worked out well for both of us :)
To be honest, my major concern at the moment is just figuring out what is wrong so I can get some treatment. I'm so bone tired all the time that I'm having trouble with my everyday life, and it's having a major impact on my husband as well which I hate (the impact, not the husband!). It's almost a worse feature than the tinnitus. I think I am OK with the hearing loss, as long as I can still use my other ear I can use headphones and the telephone, and I've been pretty good at being able to avoid noisy places, and my balance is way better now than it was at the start. I just don't want this to be how I am for the rest of my life :-[
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I guess you could say I figured out that I had AN shortly after my first visit to the ENT.
Back in September, I noticed a change in my hearing. I noticed that if I was lying with my right ear on the pillow, I would only hear a clicking when the alarm clock went off in the morning. When I lift my head, I can hear the beeping. The tinnitus, which I have had for years and was dismissed by my family doctor, had also become markedly louder as well. I was also experiencing some imbalance issues as well. My wife was convinced it was wax build up.
After putting up with all that for a couple of months, I decided it was time to have it checked out and made an appointment with an ENT Doctor.
The Doctor found very little wax and had an audiologist check my hearing at that same appointment. The hearing test showed an asymmetrical hearing loss and impairment of auditory discrimination in my left year. The Doctor recommended an MRI. I called and scheduled an MRI at the clinic that the Doctor is at and went in for it just before Christmas.
Then I started researching on the internet. I checked for hearing loss on one side and that was the first time I saw Acoustic Neuroma. Then I read web sites, forums (including here), videos on you tube and the video on this site concerning Mark Ruffalo. By then, I was convinced that I had Acoustic Neuroma.
The MRI - what a disaster. I have never been claustrophobic but when they put the coil over my face and I was moved into the tube with my arms pressing on both sides of the tube, I panicked and they pulled me back out. I have never field something like that in my life. I went home and notified the Doctor’s office and the nurse called back and said the Doctor ordered some valium and to try it again. After much thought, and persistent obsessing over it, I got a message back to the Doctor that there was no way it was going to happen. The Doctor’s nurse said fine but the Doctor wanted to see me back in a office in a couple months.
When I saw him again I mentioned Acoustic Neuroma and he said it is very rare and the odds were greatly against that. I had another hearing test the speech recognition in my left year went from 56% down to 29% - that in about 3 months. That is when he strongly suggested the MRI and told me to go to the local hospital for an open MRI and prescribed valium.
I was prescribed 2 5 mg valium tablets and took them both before the procedure. I had the MRI with and without the gadolinium contrast. With the open MRI and the fact that I kept my eyes closed, I survived. I didn’t expect to hear much for about a week. I had the MRI on Wednesday afternoon and the Doctor’s nurse called me on Thursday saying the Doctor was going to be reviewing the results of the MRI and he wanted me to see me Friday afternoon or Monday morning. She said they would squeeze me in.
That confirmed it for me and I knew I was right. I knew I had AN
I met with the Doctor late in the Day Friday and he said I did indeed have an Acoustic Neuroma 1.2cm x .70 cm. He gave me the names of a Neurosurgeon and a Neurotologist at the Gamma Knife center and I am now scheduled for the Gamma Knife Surgery on April 11.
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I'm in the "complete and surprised" column also.
Even after my ENT said he was ordering an MRI to verify an acoustic neuroma, I was so hung up on having to have an MRI that I totally missed the conversation of what he suspected it was till he said well, there's only three ways to treat it (he started to say surgery) but then said we'll discuss all that when we find out for sure. Talk about self induced stress for three weeks...
And as they say, it's all history now.
Karen
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I had been misdiagnosed for years as psychosomatic. During those years had pretty well determined I had some kind of brain tumor but not determined exactly what. When a doctor finally really listen to me he thought I might have MS.....I was relieved to find it was only an operable tumor!
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It was a complete surprise for me but a welcomed one because now I knew that my problem had a name.
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I knew something was different, once the tinnitus started. I had been going to ENT for a few years because of pain in that ear, but he could never see anything. Pain is not a symptom of AN, but I STILL have it. Anyway, I finally forced ENT to do some testing, but the two tests did not see the ear canal area. He told me I had TMJ.
Next I went to my dentist and he said NO WAY to TMJ.
Then I went back to my neurologist because I already have schwannoma in my T1 area of spine, that we have known about since 2007. I NEVER told my neurologist about my ear pain, I kept telling my ENT. So once I told him, he said let's do and MRI!
When I got to his office for the results, he still didn't have them. Secretary had to get it faxed over. This is two weeks after MRI. He walks into the office while he is reading it and says VERY LOUDLY, "OMG you have an acoustic neuroma!"
When I then went for hearing test at the ENT office, they said they would never have found it for years because I had no hearing loss and the tinnitus was my only symptom. So my pushing made them find it.
Wish I had never found it! ;)
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The best advice is to listen to your body. It all makes sense now. I showed some significant signs that I should not have ignored. However I attributed it to my time in Iraq downrange as an Infantry Officer (2006-2007), where my truck was blown up pretty good. I lost all of my hearing and that created balance issues. Fast forward until 2011. I was in Afghanistan as a contractor and remember all of a sudden losing my balance, falling down, headaches, tinnitus etc. I should have got it checked out then, but I didn't. My mentality was "drink water and it will go away." I attributed all of this to that day and ignored symptoms. Rock headed. It totally floored my when I was diagnosed. My doc said that during my explosion in Iraq that I probably had less hearing capacity to loose. He said for example I probably went from 70% to 0 rather than 100% to 0 because of this. Lesson of the story is listen to your body, you know when something is off and get checked out.
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I was totally shocked. I have NF-1 and have an optic glioma (a benign tumor on my optic nerve). I have been monitoring it since 1982, with thankfully, not change. In July of 2010 I had my yearly MRI for the optic glioma. Imagine my surprise when my GP emailed me and told me I had a "schwannoma in my vestibular area". I was in Knoxville at the time taking my daughter to her freshman orientation at the University of Tennessee. This July I will be entering my 4th year of W&W. I have tinnitus on the AN side (the right side, the optic glioma is on the left side). I have been experiencing some dizziness (the windshield wipers drive me batty when I have to drive in the rain). I'm going for vestibular testing later this month.
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luvzmutt- good luck with your testing. Everything will work out.
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Put me down in the "surprised" category. I had known something was wrong with my balance for several years. It was especially pronounced when I bent forward (felt like I was going to fall on my face) or when I had a glass of wine or other alcoholic drink. One drink and I would stagger around like a drunk person.
Also had mild tinnitus.
But I never suspected a brain tumor. When I finally went to my GP and complained about the loss of balance, she sent me to a neurologist who ordered the MRI. When the results came back positive for an AN (.9 cm) I was very surprised, but also relieved that now I knew what was causing my lack of balance. I was also relieved that I didn't have MS or some other serious disease.
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I had no idea! I had been unable to hear from my right ear for probably 5 or more years. I thought it was aging. I was told by an audiologist in 2008 that I was a few years away from needing hearing assistance. I went to a big box warehouse store for an audiogram in 2011 and the technician there would have been more than happy to sell me their high end hearing aids but I balked at the price. My internist at the time said I was fine since I could hear her soft spoken voice. I move to IN shortly after that and finally got fed up without being able to hear so I decided it was time to break down and get hearing aids. The audiologist I saw here took one look at my results and sent me to an ENT who sent me for an MRI and then for consultations with a radiation oncologist and neurologist. I then went into research and destroy mode so didn't take the time to be shocked.