ANA Discussion Forum
Archive => Archives => Topic started by: dieselducy on August 26, 2006, 05:36:16 am
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I am new here, i have been looking for an AN bb for a long time now.. I live in the states, Virginia to be exact, and i have kind of "self diagnosed" myself with an AN. my symptoms, have been a kind of rumbling, kinda like fluid or a bowling ball rolling on a floor, in my ear that ONLY LASTS for a second after i put my finger in my ear OR hear a noise, also while a am talking, after i say the last word, i hear the rumble that lasts about a second. I also notice a clicking and or a swishing sound while i am chewing, and the rumbling sound, i first noticed in 98, or 99 has slowly gotten worse over the past 2-3 years.. ALSO i have been to 2 ENT doctors and neither one thinks i have an AN but neither can explain the ANNOYING rumbling sound in my ear!! it is very annoying and if anybody knows anything about this, please help. At first, 1998 or so, i simply thought it was fluid, but it has gradually gotten louder.. I dont have any real hearing loss, but when i close my eyes and stand on one leg, i cant balance. I can stand on one leg with my eyes open, though.. I am just tryin to think of all the symptoms i have experienced.
I will say this! i have had ALOT OF LONG TERM EXPOSURE TO RADIO WAVES via Mobile/Cellular phone, and a CB radio Transmitter. I have also used a cordless phone which is also a type of radio transmitter. My wife says I am a hypocondriac, but i have ?? and i feel the people here can answer.. THANK YOU for taking the time to read this and ANY help will be appreaciated.. I will be asking many more questions as i can think of them.
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Diesel,
The ONLY way to get a dd of an AN is to have an MRI with contrast. Many of us go undiagnosed for years because ENTs and GPs won't order one. INSIST!!! I had no balance problems, but I did have moderate hearing loss and the "ear fullness" swishy thing going on. Fortunately I also had a GP who was on his toes and I got a dd of AN immediately and when the lil bugger was still small. Good luck and be persistant and I HOPE you get a clear MRI.
Capt Deb
PS how did you get the slide show in your pic? that is too cool.
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I agree with Capt Deb, INSIST on an MRI. My symptoms were ignored and it cost me my hearing. Many of the doctors are not really familiar with An's so they are not the first thing that comes to mind when someone shows up in their office with a complaint. Why is it you think you have one? I had never really heard of one until I was diagnosed. I wish I knew more about AN's beforehand.
Best of luck to you!
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Cool web page...
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I agree. Insist on an MRI with contrast. Then you will know for sure. Even my 13 year old son has some problems standing on one leg with his eyes closed. (I just had him try it to see. :-))
Jean
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lol I didnt even think to use a GIF ;D
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thanks for the replies.. my main issue is money, i have fairly crapy insurance with 1000 deductable.. anyway... I also agree that some doctors do not know what they are talking about,, if you see your MRI?? can you see the AN yourself?? My wife has hypothyroid and she is having to self medicate cause she cant get a doctor to perscribe the right amount. I live near Roanoke VA.. does anyone know where a GOOD ENT is or, what kind of Dr can diagnose an AN??
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dieselducy:
'Self diagnosis' is a poor way to identify an Acoustic Neuroma and useless in terms of seeking medical help as a physician will brush aside your self diagnosis as simply your uneducated opinion. However, if he or she is halfway competent - they'll comply with your request for them to order an MRI scan -with contrast - to determine what - if anything - you may have. I would seek medical help ASAP - and insist on that MRI - but do not offer your 'self diagnosis' (of an Acoustic Neuroma tumor) as, (a) it will be ignored and, (b) most doctors are offended and/or amused by patients with no medical training offering a 'diagnosis' to them. Keep it to yourself.
Get an MRI (with contrast) and find out for sure out what you may (or may not) have that is causing your symptoms.
We wish you well - and hope that you don't have an AN tumor. I wouldn't wish that on anyone! :(
Jim
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Hey Jim thanks man.. you are right, me being my pescimestic worry wart self have always told the doctors about my "self diag." and they do tend to kind of be amused.. anyway, one of them told me there is a good chance i have a fistula as none of my symptoms really point to an AN and i also was told about age too. and one doc asked if i could even afford an MRI as they are pricey.. Anyway, i noticed you said with Contrast? how do you get that done? is it an adjustment on the machine.. I will in the next few months probabally break down from my fear and go back to the Doctor. 2 of my biggest fears: dying on the operating table and deafness as i have perfect hearing. Now that i found a place dealing with ANs you will be updated with what is going on with me.. I am very glad i found this supportive group. ;D
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if you see your MRI?? can you see the AN yourself?
Yes, you can see the tumor on the MRI if it isn't too tiny (it shows up as a white space). The radiologists report will also note if there is a tumor and what size it is (in centimeters).
My wife has hypothyroid and she is having to self medicate cause she cant get a doctor to perscribe the right amount. I live near Roanoke VA.. does anyone know where a GOOD ENT is or, what kind of Dr can diagnose an AN??
No (I live in Connecticut) so my neurosurgeon is not a practical choice for you even if you wanted to use him - and besides, he is booked solid, as i understand it .
A radiologist (the physician that 'reads' the MRI scan and writes up a report, available to you if you ask for it - you may have to insist) can usually spot an AN. A neurosurgeon familiar with brain abnormalities can diagnose the tumor as an Acoustic Neuroma if that is actually what you have. Not all neurosurgeons are well-experienced with AN's as many do more spine operations than brain operations. Removing an Acoustric Neuroma is a very specialized, (obviously) delicate, lengthy surgery that requires lots of experience and a full surgical team. Do not use a neurosurgeon who hasn't performed hundreds of AN removal surgeries. Experience is critical.
Sorry about your wife's problem...she really should find another doctor.
MRI's cost about $5,000. Is that insane, or what? However, most MRI labs and/or hospitals will accept small monthly payments on your $1,000. deductable. It beats getting squat. I have payment plans at a few labs and two hospitals to pay off the deductables from my pre-op tests and hospitization. None of them objected (in the least) to a payment plan instead of just receiving a check for the full amount of the bill. By the way, my total bill for all services connected to my AN and the removal surgery came to near $100,000. and yes, my Blue Cross insurance did have deductables. Hey, this is your health and possibly your lif[/u]e we're talking about here. Money should never stop anyone from getting whatever they need. AN's can kill you, if left to grow. My neurosurgeon said not to worry about the fee. He would take $10. per month if necessary, because, he said, that I had to have the AN removed, immediately...and I did. I have yet to even receive his bill for services but I know he charged Blue Cross a mere $28,000 for the operation. Very reasonable, considering the time and expertise involved. Not to mention the very successful outcome.
An MRI (Magnetic Resonance Imaging)scan 'with contrast' is critical to diagnosing an Acoustic Neuroma. Contrast is a clear fluid and is given through a small IV drip (i.e. a small needle) and shows up blood vessels more clearly. Highly recommended for spotting Acoustic Neuroma tumors (and lots of other things). It's quick to administer (about 3 minutes) and very safe. Most foks have no negative effects from the contrast fluid. Any good neurosurgeon will order the MRI 'with contrast'.
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When i did go to the Dr,,, I did have hearing tests both times, and one time they put something in my ear that made pressure in my ear and it was very uncomfortable.. ALSO HOW COMMON are Acoustic neuromas??
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The numbers I've seen (on this website) are that Acoustic Neuromas occur in about .01% of the population or 1 in 100,000 people. Relatively rare. Browse this site, it's full of useful informtion.
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Anyway, i noticed you said with Contrast? how do you get that done? is it an adjustment on the machine..
For an MRI with contrast, you usually first have a series of plain images done. You then receive an injection of the contrast dye (usually gadolinium) which gets into your blood stream and highlights any areas of concentrated blood vessels (such as tumors). Then there's another series of MRI images taken after the injection. I've had 3 MRIs so far - each session was 40ish minutes start to finish.
MRI with contrast with really the best way to diagnose an AN.
Katie
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My ENT first sent me in for a CT scan and said I "had no tumors". He wasn't looking in the right area! It took another symptom to show up before I was sent to a neurologist. Then I got the MRI. Classic symptoms of Acoustic Neuroma are: Hearing loss, feeling of "fullness" in the ear (you went up the mountain and the ears never "popped" when you went down the other side...), tinnitus, balance problems and numbness of the face on the AN side. This affects the skin only. You might experience a salty or slightly metalic taste and the AN side of your tongue, especially on the outer edge might feel like you have burned it on hot coffee. You might also have headaches. I had three of those symptoms and wasn't diagnosed correctly for over a year. Many people on here went for quite a while before getting the proper diagnosis. My new ENT said he sees maybe two a year in his practice. If I had "googled" the right words I could have diagnosed myself, but I was focused on the tinnitus and didn't look for the other things. I don't know why, except maybe I didn't know what to call the "fullness in the ear". I'd never heard of acoustic neuroma before. I hope you don't have it....you certainly could have something else. Unfortunatly, when something is inside the skull, the only way to get a good peek at things is with an expensive procedure!! I have a $2500 deductible...so tell me about it. >:( Good luck and I hope you get the help that you want. You could move to Canada and live there...medical is cheaper!!
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Diesel,
Hello and welcome! I just found out about my AN earlier this month and I too live in Roanoke VA. I visited Dr. Harter (ENT) and explained my symptoms. He did a hearing test and ordered the MRI. Dr. Harter hasn't dealt with a lot of ANs so he then referred me on to Dr. Sismanis at MCV in Richmond. I would have no hesitations in recommending you see Dr. Harter... I've included a link below that explains his background and includes his contact information.
You should take this very seriously and have yourself checked... never ignore a gut feeling. Money should not be an issue when it comes to your health!
Please feel free to contact me directly if you would like - I'm happy to help as much as I can.
Laura
http://www.roanokeent.com/index.cfm/fuseaction/site.physicians/action/dtl/phys/99799526.cfm
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DD,
You asked about prevelence of ANs. The 1 in 100,000 people statistic is a little misleading. It's actually 1 in 100,000 people diagnosed every year. So the number of diagnosed AN patients walking around is probably 10 to 20 times that number. Studies on cadavers have also indicated that many people who have an AN live out their lives either without being bothered by it, or at least not having it diagnosed. Cadaver studies estimate that perhaps as many as 3 to 6 % of people may have an AN.
As others have mentioned, the "gold standard" for diagnosing an AN is an MRI with contrast. Search this forum for "MRI" and you'll find a few MRIs posted.
Regards,
Rob
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i went to a doc in salem about 1.5 years ago,, i have absolutely no hearing loss whatsoever,, just that funny noise that sounds like fluid, or a bowling ball.. also noticible when i yawn or chew..
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Welcome diesel from Hampton Roads Virginia !! (currently rain soaked...we got over a foot here of rain from Ernesto and lost power for 3 1/2 hours). There are a few of us here in Virginia starting to post..glad to see some neighbors. :)
You've found a great place for info and support...
Gary
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Dont lose any sleep about deafness in one ear .. of the many problems a large AN can cause .. its the least of the problems... I too was worried about my hearing .. but now thats its gone ... it really not a big deal ... I do have a BAHA hearing aid which helps ...
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Quite honestly, there are many diseases of the ear (including meniere's) and others. A colleague at work had the rumblings you described and they weren't an AN.
There are other tests that are cheaper that may signal the presence of an AN. One is an ABR test.
When I was at House in 2001, they were doing research on that very topic, trying to make it even more telling for those unable to afford an MRI. I don't know if that research project yielded a better or easier diagnostic level.
The MRI with contrast (as suggested by others) is the definite way to go.
I wish you well.
Kate