ANA Discussion Forum
Archive => Archives => Topic started by: sarah on August 13, 2006, 10:24:56 am
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Hello,
I would greatly appreciate any of your comments about my situation. For four years now, I have had tinnitus and hearing loss in my left ear. I also experience fullness off and on in that ear, and when I sing, I hear my voice loudly inside that ear. Shortly after my symptoms began, I had an MRI with contrast that was negative for an AN. I go yearly to my ENT doctor, and had another MRI a year ago, that was also negative. During the first three years, there was no change in my hearing loss. This past year, I have lost more hearing in that ear and the tinnitus is louder. My doctor has never been able to diagnose my condition, so calls it "a-typical" menieres. However, I do not fit that category either, because I have a high tone hearing loss rather than low which is typical for menieres, and my hearing loss and tinnitus is constant, rather than intermittent, which is typical for menieres. All my symptoms follow the pattern of an AN.
So my question is, can you have symptoms of an AN, and actually have an AN but it be too small to show up on an MRI with contrast? It seems if I had one four years ago, and another three years later, it would show up if I had one. Do you agree? Or could it have just started to grow enough now, that it is causing a greater hearing loss?
I would appreciate hearing from any of you. Thank you so much! Sarah
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If it's not showing up, it may not be an AN but don't take their word for it and give up, something is wrong. Keep after the docs, get second and third opinions. Mine was misdiagnosed for four years. My sysmtoms were the same as yours but with severe headaches too. I had been told I had tennitus and there was nothing I could do for it so I went on my merry way. Years later as the ringging got louder and worse, also it has always been constant, never intermittant. And as my headaches got much worse, I went to a neurologist in 2000. Got an MRI and was shown a small mass on the film and told it was a blood clot. Went through an angiogram to be told they couldn't find anything, no clot. The explaination was that it could have been a clot that dissapaited on its own, or it may have been a bad MRI. With that I asked for a new MRI to be sure the previous "mass" was gone. They refused and would not order one, therefore my insurance wouldn't cover it. They said a new MRI wouldn't tell them anything, that the angiogram told them I was fine. So I again went on my merry way. Four years went by, the symptoms got consistantly worse. In July 2004, I went to the ENT, taking my 2000 film. They got me in for an MRI that day and diagnosed a 2.5cmX1.5cm AN. Also showed it to me on the old film and it was 40% smaller 4 yrs earlier. I have a friend who was having abdomen pain for a long time and after finally getting an MRI was told she had a huge tumor in her pancreous and that she had pancreous cancer. Instead of a biopsy, they had to get the tumor out anyway and would biopsy it after removal. During surgery, they tore her up looking for a tumor that did not exist. No cancer, no tumor and five different docs gave her the same diagnosis. Knowing this and the fact that my first docs suggested that the MRI might have been a "bad one" tell me they are not always accurate. You know your body, you know when something is wrong. Even after being told nothing was wrong with me, I always knew something was not right. Keep researching, keep checking. One thing I have learned is you have to take your health into your own hands. Doctors are not Gods, and medicine is not proven, it is a science. Maybe that's why they call it "practicing medicine"
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Sorry for your fears - and yes its possible, of course.
Best advice is surely a) get a second opinion
and b) keep an eye on it
Very small ANs do sometimes offer many symptoms
- despite the size, these things are hard to spot
when very small
maybe your 2nd opinion will suggest a high contrast MRI scan (?)
best regards
Tony
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I'd go for another opinion and do my mri at a different place.
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Hi Sarah!
First of all, was your MRI a good T-3 weighted closed MRI? An 'open MRI' with 1.5 Tesla strength of open scanners is not sufficient for adequately imaging the brain for AN.
Re Atypical MM, each pt. does not have to have diagnostic criteria perfectly as outlined. It is, ah, "Atypical". One instance might be MM w/o dizziness ( cochlear hydrops ). Another might be 'Vestibular Hydrops' with minimal hearing loss. I've heard of hearing loss curves going each way for both AN and MM.
Re AN; I've heard of small as 2 - 3 mm. picked up by MRI. MRI has an inherrant error factor of + or - 1 to 2 mm. Guess I'd access the interpreting Radiologists written report and read it myself. I may also have another, such as Drs at HEI http:/www.hei.org/ ( see contact info ) interpret the MRI. They will do this for free and return telephone call for free.
Otherwise, I'd wait 6 months and try getting an MRI at a different facility.
Good luck!
Russ
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Hi Rus,
What do you mean concerning a closed MRI and an open MRI? Do you mean the actual machine that they use? If so, mine was in a closed capsule, and high contrast dye was used.
Thank you to all of you for your comments and suggestions. I did seek a different doctor after my first MRI, and made sure I took my films with me when I met with the new doctor. So they were not only looked at by the radiologist, but also two doctors. Sarah
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It freaks me out as well the number of people who seem to have re growth....but I have to mention that maybe we are more likely to hear these occurances on this board because the individuals with the re growth and more problems with their treatment will be more likely to be posting here. Im sure that a large percentage of people have treatment and it gores very well and they move forward without really looking back very much....does that make sense ??
My doctor actually advised me not to spend too much time on the internet because often i would only hear/read the worse.
However
I love you guys and the support we have here is much needed, appreciated and i think very necessary in our journey.
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I believe that one cannot get too much information. Arm yourself with every bit of detail you can afford from doctors. Keep posting here. We can tell you about our own experiences. Yes, you do read about successes and problems. But as you get more information you will be more able to make peace with your AN and the treatment of it. Doctors are not parents. They are not responsible to protect us from the bad things. Your parent and permission are inside your own head. You are strong and intelligent. You will know when you have learned enough. Keep up the good work!
As for me? If one cell from my sticky tumor was left behind, I will face it. I will watch it. If it grows too large I will let my doctor deal with it with the latest and best technology available at that time.
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sarah:
I mean no offense to you or anyone else, but, to the best of my knowledge, (I could be mistaken) no one posting on this message board is a physician, much less, a neurosurgeon with extensive experience recognizing and treating Acoustic Neuromas. We are all patients - or former patients - and as such, we have much useful information we can share as well as offering 'newbies' the kind of support and understanding that comes with our often hard-won personal experiences dealing with an Acoustic Neuroma, both pre and post-op. However, ethically, we cannot diagnose each other. That being the case, I wouldn't dream of advising you as to what your symptoms may indicate. I can only tell you what I have learned from physicians...that AN's can and often do stop and start their growth pattern and can lie near-dormant for many years. My neurosurgeon told me that my large AN tumor (4.5cm) may have 'been in there for 15 years or more' before it finally grew large enough to disturb the nerves that caused the symptoms that drove me a doctor's office and having the MRI that helped him 'discover' my tumor.
I would strongly suggest that you or anyone else who suspects they may have a small but growing AN tumor not only insist on an MRI brainscan but seek out a physician that listens to you and will address your concerns, even if only to tell you that you do NOT have an Acoustic Neuroma tumor, which I always hope is the case in this kind of situation. I won't tolerate a doctor that ignores my concerns or brushes off my questions. I don't expect my doctor to be my buddy but I want a physician who treats me and whatever my medical problem may be - with respect. Doctors are not gods. They do make mistakes and miss things, occasionally, or in some cases, they simply don't know what to look for - or recognize it when it presents itself, as with some AN cases.
This is your health we're talking about! There is little-to-no benefit to you in tolerating a physician - who may be pleasant enough and even competent - but who is unresponsive and/or uninformed, just because you've been going to him or her for a long time, he or she is on your insurance plan or has an office conveniently close to where you live. I drive 60 miles (round-trip) to see my neurosurgeon. My surgery was done in a hospital a somewhat inconvenient 30+ miles from my home. However, the neurosurgeon I had is highly experienced in AN surgery (he did a great job) and the hospital is first-rate. You do whatever you have to do when your health is at stake. I did.
I can tell you now that support groups and message boards will have a lot of 'horror stories' - people who have had poor results from surgery - who just want and need to vent. They may be a minority but they are highly represented in support groups. I understand that and can respect their need for support. My brave and beautiful wife, Tina, has suffered with Fibromyalgia for well over 10 years,. She used to have doctors tell her her pain was "all in her head". It was tough when one physician, in effect, told her she was 'imagining'' her pain because "nothing showed up" on CAT--scans or X-Ray films. Of course, she dropped that doctor, fast. No loss. My wife also used to be very active in a local Fibromyalgia support group but she quickly found that most of the members just came to complain ("you think THAT'S bad, wait until I tell you about MY pain!) and as she is a positive person who has come to grips with her disability (she has had major spine surgery, also) she felt that she wasn't getting anything from the meetings and no one seemed very interested in hearing anything about how she was successfully coping with her Fibromyalgia. This board is far better than that - but you will read a lot of rather sad stories, as well as see a lot of sincere sympathy, empathy and heart-felt encouragement, as well as some darn good advice! If you eventully are medically diagnosed with an Acoustic Neuroma, just remember that we're individuals and - especially with this particular condition - what happens to one person may not mean the same thing will happen to you. I always advise AN-diagnosed 'newbies' to choose your neurosurgeon very carefully...look for extensive 'AN experience', not a 'newbe - ' or a neurosurgeon that knows more about performing spine surgery than brain surgery.
I'm over 2 months post-op and almost back to where I was, physically, before my AN symptoms took over my life, yet I still visit this website almost daily and I still occasionally post here. I do so mostly to encourage others, offer my support and to let 'newbies' know that being diagnosed with an Acoustic Neuroma tumor is not automatically 'the end of the world', as many seem to believe. It's a minefield, for certain, but some of us make it through O.K., although no one comes through without a struggle. Hey: it's a brain tumor!
I trust that your symptoms and MRI scan(s) will not indicate an Acoustic Neuroma tumor - but only a physician is competent to make that diagnosis. Find one with experience with this specific type of tumor (preferably, a neurosurgeon) and let him or her read your MRI and evaluate your ongoing ear symptoms.
I wish you well.
Jim
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Sarah:
Keep at it until you get some answers. I had to push and push to get a diagnosis.
Jim Scott:ÂÂ
What you wrote about everything to do with an AN being a minefield was the most accurate description yet. It truly is just that. Some skip through with no suprises and some blow up with every step.ÂÂ
Have a good week everyone. Kathy
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Heart felt thanks to you Jim,
You spoke words I think but couldn't write.
Biggest hugs,
Best wishes,
Windsong :)
sarah:
I mean no offense to you or anyone else, but, to the best of my knowledge, (I could be mistaken) no one posting on this message board is a physician, much less, a neurosurgeon with extensive experience recognizing and treating Acoustic Neuromas.  We are all patients - or former patients - and as such, we have much useful information we can share as well as offering 'newbies' the kind of support and understanding that comes with our often hard-won personal experiences dealing with an Acoustic Neuroma, both pre and post-op. However, ethically, we cannot diagnose each other. That being the case, I wouldn't dream of advising you as to what your symptoms may indicate. I can only tell you what I have learned from physicians...that AN's can and often do stop and start their growth pattern and can lie near-dormant for many years. My neurosurgeon told me that my large AN tumor (4.5cm) may have 'been in there for 15 years or more' before it finally grew large enough to disturb the nerves that caused the symptoms that drove me a doctor's office and having the MRI that helped him 'discover' my tumor.
I would strongly suggest that you or anyone else who suspects they may have a small but growing AN tumor not only insist on an MRI brainscan but seek out a physician that listens to you and will address your concerns, even if only to tell you that you do NOT have an Acoustic Neuroma tumor, which I always hope is the case in this kind of situation. I won't tolerate a doctor that ignores my concerns or brushes off my questions. I don't expect my doctor to be my buddy but I want a physician who treats me and whatever my medical problem may be - with respect. Doctors are not gods. They do make mistakes and miss things, occasionally, or in some cases, they simply don't know what to look for - or recognize it when it presents itself, as with some AN cases.ÂÂ
This is your health we're talking about! There is little-to-no benefit to you in tolerating a physician - who may be pleasant enough and even competent - but who is unresponsive and/or uninformed, just because you've been going to him or her for a long time, he or she is on your insurance plan or has an office conveniently close to where you live. I drive 60 miles (round-trip) to see my neurosurgeon. My surgery was done in a hospital a somewhat inconvenient 30+ miles from my home.  However, the neurosurgeon I had is highly experienced in AN surgery (he did a great job) and the hospital is first-rate. You do whatever you have to do when your health is at stake. I did.
I can tell you now that support groups and message boards will have a lot of 'horror stories' - people who have had poor results from surgery - who just want and need to vent. They may be a minority but they are highly represented in support groups. I understand that and can respect their need for support. My brave and beautiful wife, Tina, has suffered with Fibromyalgia for well over 10 years,. She used to have doctors tell her her pain was "all in her head". It was tough when one physician, in effect, told her she was 'imagining'' her pain because "nothing showed up" on CAT--scans or X-Ray films. Of course, she dropped that doctor, fast. No loss. My wife also used to be very active in a local Fibromyalgia support group but she quickly found that most of the members just came to complain ("you think THAT'S bad, wait until I tell you about MY pain!) and as she is a positive person who has come to grips with her disability (she has had major spine surgery, also) she felt that she wasn't getting anything from the meetings and no one seemed very interested in hearing anything about how she was successfully coping with her Fibromyalgia. This board is far better than that - but you will read a lot of rather sad stories, as well as see a lot of sincere sympathy, empathy and heart-felt encouragement, as well as some darn good advice!  If you eventully are medically diagnosed with an Acoustic Neuroma, just remember that we're individuals and - especially with this particular condition - what happens to one person may not mean the same thing will happen to you. I always advise AN-diagnosed 'newbies' to choose your neurosurgeon very carefully...look for extensive 'AN experience', not a 'newbe - ' or a neurosurgeon that knows more about performing spine surgery than brain surgery.
I'm over 2 months post-op and almost back to where I was, physically, before my AN symptoms took over my life, yet I still visit this website almost daily and I still occasionally post here. I do so mostly to encourage others, offer my support and to let 'newbies' know that being diagnosed with an Acoustic Neuroma tumor is not automatically 'the end of the world', as many seem to believe. It's a minefield, for certain, but some of us make it through O.K., although no one comes through without a struggle.  Hey: it's a brain tumor!
I trust that your symptoms and MRI scan(s) will not indicate an Acoustic Neuroma tumor - but only a physician is competent to make that diagnosis. Find one with experience with this specific type of tumor (preferably, a neurosurgeon) and let him or her read your MRI and evaluate your ongoing ear symptoms. ÂÂ
I wish you well.ÂÂ
Jim
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Excellent post Jim!
I find it inspiring to hear that you're almost back to where you were before your symptoms forced you to obtain treatment! Especially with a growth that size! This should be especially inspiring to others who are about to undergo the journey.
Your experience with this is similar to mine in that regard. Somehow, I came through without any debilitating, residual problems aside from the usual one-sided deafness and my growth was 5cm x 5cm. Come to think of it though, I also had the fluid problem - hydrocephalus - and I'm still doing alright!
This week is the one year mark for me. Exactly one year ago today I was in Mass General for the shunt installation; in September, they removed the tumor.
Two weeks ago I was in for a check-up with my primary care doctor. At one point he brought another doctor into the exam room to sort of "show me off" so she could see how well I was doing. She told me about her grandmother having had an acoustic neuroma and that she's still going strong at 95! She said that she's in great shape but that she just couldn't hear out of one ear. I love stories like that!
Take care, Paul
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Sarah,
I'm sorry that I did not address any of your questions in my previous post.
So, you're a musician? I am too! In fact, I sort of eke out a living playing music. I'd been going deaf in my left ear since 1999 but it wasn't until 2005 that I was overcome with other symptoms, e.g.: double vision and especially equilibrium problems. As strange as it may seem, it spite of the gigantic growth I had, I never suffered with any headaches - mostly neck soreness.
I'd been thinking - as well as everyone else around me - that my problems stemmed from over-exposure to loud music when in fact, it turned out that my malady had in fact absolutely nothing to do with loud music or noise.
So, you've had several MRIs' that have revealed nothing abnormal? This is a good thing! Did they boot you up with that dye that illuminates tumors? I forget the name of it offhand. I'm sure they did because it must be standard operating procedure; it's the dye that makes the growths visable.
What you must bear in mind is that we're all put together a little differently and because of this, feel and experience changes in our bodies differently. There are a number of ways we can lose our hearing, A.N.s only being one of them. There is a girl I know who has been a friend of my family since 1967. She lost her hearing in one of her ears from a virus! Then there is the standard way most of us experience a gradual atrophying of hearing - some quicker than others: exposure to loud noise. It really doesn't take much to do it either; just the constant rush of air through an open window in your car or noise from a fan can do it over time.
I was out shopping for DVDs tonight and saw a guy that had hearing aids in both ears. Curious, I struck up a conversation with him.
It seems that the source of his problem is an inherited weakness and he was on SSDI because of it. He evidenced some of the symptoms of an A.N. or NF2 patient: equilibrium probems, tinnitus and fullness in both ears. There are people, that, even though they still have hearing in both ears, have hearing that is so poor that I have much better hearing with just with one ear than they have with both! Their high frequencies are shot.
I know several people that lost their hearing from being cuffed on the side of the head. Then there's Menier's disease.......
In your case, without the proof that an MRI can conclusively provide in the case of Acoustic Neuroma, this is most likely not the source of your problem.
Please keep us posted of any new developments!
Take care, Paul
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I have had the Tinnitus for four years. Had an MRI at that time which didn't show anything. The MRI was repeated (at my insistance) this June and they did find a 9.5 mm AN. The Tinnitus (according to a Tinnitus specialist I saw yesterday) may or may not be related to the AN. I think we all need to be vigilant with advocating for ourselves and exploring all possibilities. In my case the specialist says the Tinnitus could have been the first clue to the AN even though it was too small to show on the MRI but it could also be cause by many other factors. The specialist told me that Powell Jasterboff, Emory University in Atlanta has done a lot of work in the area of Tinnitus. She studied under him. I previously had the impression there was nothing you can do about Tinnitus but now am more encouraged that there may be some help out there.
Bev
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Hi Bev,
Just curious if your first MRI contained the high contrast dye? Thank you for your information.
Sarah
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BevM,
In response to your mention that the tinnitus may or may not have been due to the AN. The way it was explained to me by the ENT is that tinnitus is a symptom of hearing loss. As one looses hearing the brain sends signals (the ringging) to try and replace that which is missing. Kind of like when someone who had to have a limb amputated, they keep feeling pain or an itch on the missing limb. This made sense to me as he explained that this is why many people develope mild and/or intermittant tennitus as they get older. Since gradual hearing loss is a natural part of aging, the gradual onset of I guess a more mild tinnitus occurs. So when one has an AN tunmor that is causing hearing loss, the brain starts sending the signals to try and replace the missing hearing, thus the tinnitus. So in a round about way, Yes, the tinnitus is caused by the AN. Oboviously this is just the explainagtion of my ENT who diagnosed my AN who has specialized in AN surgeries for many years at the House institute in CA and now at the University of Utah Hospital The accuracy is unknown but it sure made sense to me. Hope that helps.
LOL
Patti UT
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Jim,
Thank you for your comments. I reread my letter, and realized I was asking for a diagnosis, which I know is wrong. Thinking back, I should have reworded my question, by asking....Did it take anyone several MRI's to detect the acoustic neuroma?
I thank all of your for your comments, they have been a great help to me. Sarah