ANA Discussion Forum
General Category => Inquiries => Topic started by: microsoftfree on March 11, 2009, 02:55:30 pm
-
I am so glad I found this site! I have learned so much and there is so much info here if I need it and that really helps.
Several months ago, I started having problems and a month ago, landed in the emergency room...I was even dizzy laying down. I don't remember when the ringing started, but it's been over a year. Came and went and thought it was probably wax build up or something.
Anyway, they ruled out my heart through testing and sent me to an ENT and he sent me for a hearing test. She thinks it's possible I have a tumor on my nerve and recommends an MRI. Sent me back to the ENT. All of that to say that I'm glad to find out about the different MRI's!
One thing I haven't seen mentioned here, though, is hearing your heartbeat in your bad year. I's kind of a buzz type noise as opposed to the ringing.
-
Hi MSF and welcome... :)
the "heartbeat" in your ear may possibly be pulsating tinnitus. If you go to the forum homepage and do a "search" option for "pulsating tinnitus" you may see many thread end results.
the only true way to help determine if you have an AN is with an MRI done with contrast (the contrast will light it up, if one exists).
Again, welcome to the site and let us know if we can be of help! :)
Phyl
-
Welcome to the forum! As said, you'll find lots of wonderful information and very supportive people here. I'll echo Phyl's comment to be sure you get the MRI with contrast (ironically, my doctor orders both with and without contrast at the same time). If a tumor exists it will be VERY hard to miss with contrast. Phyl's right that it might be pulsating tinnitus that you're "hearing" on the affected side. I've even seen some people "hear" it on the non-affected side. Strange, but it does happen.
Welcome aboard.. Let us know if you have questions.
Regards,
Brian
-
Hi and welcome to the forum. I hope it turns out that you don't have an AN, but if you do, you've found a great place with wonderful people to talk to. As Phyl and Brian have told you only an MRI can tell the story for sure, so you should have one ASAP so you can get an accurate diagnosis. Have you scheduled your MRI yet? As for the pulsating tinitus, I know I get it in my good ear from time to time, but only hear it if I'm laying down -- I can't remember whether I had it in my AN ear also, but maybe. I do know that until I read about it here, I just always thought I was listening to my heart beating. Please feel free to ask any questions or just vent -- we're here to help however we can.
Wendy
-
Hi Microsoftfree! (Yes, i love my MAC too!)
Welcome to the forum and good luck with the MRI with contrast. I too, hope you don't have to join the AN club....
But, if you do, you have DEFINITELY come to the right place! The folks here are unbelievably MARVELOUS, so caring and giving of information, support and time.
You can see my by signature - undiagnosed for maybe 12+ years - OMGosh! I would have continued down that road, had it not been for my sister (Bigsister) who was diagnosed last year. Then i 'ditched' the local ENTs and went to a major medical center and asked for the MRI with contrast. Thank goodness for those who go before us!
Watch & Wait is one place to be at least initially. I decided to continue W & W until i have a second MRI next month since my AN is smaller and not touching the brainstem. The MRI is the key - we are lucky to have such imaging available today.
All my best to you and your family.
Keep us updated on your progress, and ask lots of questions here!
Sincerely,
Sue
PS I had one episode of dizzy lying down, too. Pretty scary affair - came out of nowhere.
-
I don't REALLY mean this, but I already feel like it would almost be a sad thing NOT to have one. This place is so full of info and friendly people, that it will/would be sad to have no place to go if the MRI is a dead end. Does that make sense? Reading about all the young people here makes me glad I'm old and won't have to put up with this stupid ringing that much longer! LOL
I am the type of person that wants to know everything I might be up against so I won't be so confused if I do have AN. Maybe a form of control, maybe. For example, it sounds like coming home after surgery might require someone to be there with you? That will automatically rule out surgery for me. I doubt my kitty cats could be of much help. There will also be major money issues, so hopefully, it will be really small and in early stages. I go back to the doc next week and we will discuss all this then, so I'll be here lurking and reading in the meantime. I've already learned that I should tell him I went to the library and not the internet.
Thanks everyone!
-
Microsoftfree ~
I'll happily join the welcoming committee. :) I have to state upfront that I like my Microsoft PC - but we're a tolerant bunch and don't discriminate based on computer preferences. :)
Although I'm pleased to learn that you find our forums so friendly, I have to hope that you really don't have an acoustic neuroma. However, if an MRI verifies that you do, irradiation may be your best option - but certainly not the only one. Although surgical AN removal methods have vastly improved in the past 30 years , the endoscopic approach is showing great potential for much less invasive AN removal surgery. However, the fact remains that irradiation is completely non-invasive. Even so, radiation is not a panacea and has it's own issues. To be effective, it is usually limited to tumors under 3 cm. Those with larger tumors have no choice but surgery.
I trust that your AN, if it exists, will be amenable to radiation. I wouldn't tell your doctor too much but if he asks where you got your information, "the library" is a good answer. ;) Unfortunately, some AN patients read things on the internet they may not always understand (or disregard the context) and draw the wrong conclusions that their doctor has to deal with. Conversely, some doctors seem to prefer a patient who is clueless about their medical issue. I feel most comfortable with a physician that respects me for seeking some knowledge about my problem but I try not to give the impression that I know more than the doctor. This usually works out quite well. If not, I would seek out another doctor who was more simpatico.
I 'll look forward to an update following your MRI.
Jim
-
Greetings, Microsoftfree, I had to share with you that I have had pulsatile tinnitus for several years. My AN went undiagnosed for more than four years, and my original MRI was misread. Because of the heartbeat sound in my ear, I also went through a battery of heart and vessel tests. They all came out normal. The pulsating tinnitus did not go away with surgery and removal of the tumor. It actually escalated. I am used to it, and it does not disrupt my day with other noise around me. It is most annoying when I lay down to sleep. That's when it seems loud. I also have some tinnitus of a different rhythm in my good ear, so basically I have my own band in my head. I view it as my new normal and have adjusted to it. It's really not that big of a problem.
I'm glad that you found the forum. We're all so fortunate to have someplace to share.
SUE
-
I don't REALLY mean this, but I already feel like it would almost be a sad thing NOT to have one. This place is so full of info and friendly people, that it will/would be sad to have no place to go if the MRI is a dead end.
We won't kick you out just for not having an AN, especially if you have all the wonky head symptoms. :)
For example, it sounds like coming home after surgery might require someone to be there with you? That will automatically rule out surgery for me. I doubt my kitty cats could be of much help.
Yes, you would certainly need some care for a couple of weeks after surgery - and not just from cats. Radiation treatment is more manageable in that respect.
We do have some forum members (forumites, as we like to say) that don't have ANs. Welcome to the forum, no matter what you have.
Steve
-
Hi Microsoftfree!
One other thing i have learned on this site is that if you don't have an AN, some members have spoken about the other types of conditions found in the brain, some with similar symptoms. Right now i have a friend who needs to go see the ENT - but after multiple local visits (with some of those types that don't know what they are doing or don't recognize skull based tumors, etc) she will not go, keeps putting it off. She was recommended to my ENT at UVA and i told her we should go to our appointments together, serious! She still won't go....
Anyway, there is all kinds of information here, and as you state - the folks are marvelous!
So i hope you stay around awhile and learn some things, meet some people. If you don't have an AN, maybe someone here can point you in another direction to find the information you need.
I wish i could meet ALL these people in person! ;D
(I know someone will chime in and tell me to sign up for the Convention!)
-----------------
Jim - Can we have 'simpatico' for a word of the week? I was a Spanish major in college - i love that word!
(Where is LA David?)
Sorry for the highjack, MFS!
Take care.
Sue
-
Sue...I'm not microsoft-free anymore...lol For a time, I got rid of Microsftft and installed a linux program. While I like it, I grew weary of learning new things and went back to simpler. ;)
Phyl...I have determined by feeling my pulse in my wrist, that it definitely isn't my heart beat so must be pulsating tinnitus. The hearing test doc said to do this and hoped it wasn't my heart beat or I'd have a real problem as a tumor might be pressing aginst an artery and that could be bad.
Is a contrast MRI one where they shoot dye into you? If so, where do they shoot it in at?
-
MSF~
They just shoot it in your arm (or if you have an IV or PICC they can use that port) like when they take blood. It is no big deal. I always wondered how that little bit of dye could get to your brain so fast & how it knows to go there...
K ???
-
The contrast injection is usually done with Gadolinium. This is a clear metallic substance that helps to show the difference between normal and abnormal tissue. It's a very small injection - I think about 5 cc, and it does not hurt. Normally, people have no reaction from it. The kidneys will flush it out of the sytem. I wish they would have used it on my first MRI which was four years before they found the tumor. Only my surgeon could see the signs of the tumor in my four year old MRI without the injection. With the injection at the time of my diagnosis, the tumor looked like a golf ball. Now I would not feel secure about a brain scan that did not use the injection. It helps paint a clearer picture of what is going on in the head.
I hope you get some answers soon. Not knowing is one of the hardest parts. No matter what, there are lots of folks ready to listen and answer your questions. Stay positive.
SUE
-
Your username caught my eye! I've been Micro$oft free for decades--started on UNIX and switched to Linux along the way. On the rare occasions when I tried using windows, I couldn't BELIEVE how limited, limiting, and uncustomizable it was. I'm sorry to see you went back to the dark side. :o
Anyway, I want to wish you good luck on getting your problem figured out. My AN was just diagnosed two weeks ago, although I've had symptoms for over 5 years (and previous tests failed to show anything).
-
Is it normal for the dizziness to come and go?
-
As Steve mentioned earlier, I am one of the forumites who did not have an AN, but instead was treated for a cpa meningioma. My surgery did require someone looking after me. Those who chose radiation can tell you how their recovery went and what it entailed.
We welcome you, but hope that your diagnosis is simpler than an AN! Absolutely do read and research all you can. You really need to be on top of things in order to make the best possible decisions. We like to remind people that knowledge is power, and you need that power in order to successfully navigate the medical waters. Good luck!
Priscilla
-
I wish i could meet ALL these people in person! ;D
(I know someone will chime in and tell me to sign up for the Convention!)
I think that's my cue. August. Symposium. Chicago. Need I say more??? Yes, times are tough, money is tight, and the economy is horrendous, but all the more reason to spend some time with your fellow forumites making merry and learning more about ANs. There's nothing like being with a group of people who know what you've been through - or will be going through. IMO, the more the merrier!
Now back to the topic at hand . . .
Hi, miscrosoftfree and welcome to the forum ;D
I don't have much to add to what's already been said. If you have an AN you've come to a great place; but as Steve said, if you don't have one you're still welcome to stick around.
A MRI with gadolinium contrast is the way to go for a definitive diagnosis. The gadolinium is no big deal - as Sue said, it's a simple injection into the vein in your arm. It will be over before you know it; most people are more concerned about being inside the MRI tube. My best advice for that is close your eyes and pretend you're somewhere else. I personally was on a beach in Maui (without my ex-husband) both times I had MRIs - wish I would have gotten a little suntan though ;) I'm confident I'll be returning to that same beach next month when I go for my 2nd annual post-op MRI.
I can't say if dizziness coming and going is normal or not; it wasn't a symptom I experienced. You'll find that all AN patients have similar but different symptoms both prior to, and after, treatment. I know that sounds confusing, so let me put it into other words. No two AN patients are exactly alike and no two AN journeys are exactly alike either - we are all unique.
Good luck with your MRI. Please let us know the results.
Jan
-
Well, saw the doc today and I think I'm in more of a watch and wait than I was prepared for. He wants me to come back in 6 months for another hearing test to see if it gets worse. I'm not real happy with the answers to some of my questions I asked either.
After telling me the "Plan", I asked, "Is there any reason to suspect a tumor on that nerve? I was expecting you to want an MRI."
Answer: " You just had an MRI when you went to the hospital last month, didn't you?"
Me: "No, they did a catscan of my head to check for trauma or something. It wasn't an MRI."
Him: " Oh, I thought you said you had one, but it really doesn't matter as a catscan would show any tunors you might have anyway. I think an MRI would just be wasting your money."
LOL I wanted a conservative doctor, but not quite that conservative. So I'm thinking that since the dizziness isn't constant, there's no facial mucsle problems, and no pain...I think I'll just keep looking at info here and will check to see what else it could be, wait the 6 months and get another hearing test.
The hearing doc was really urgent about needing an MRI, so that's a little concerning to me. I HAVE, though, found an ENT clinic really close to where I work that does the surgery. If the hearing doc still thinks I need one, and he keeps his treatment the same, I will go there and get a second opinion. If the dizziness gets worse, I won't wait.
Bottom line is, something was really wrong to be so bad that I went to the hospital and need to find out what it is. That statement is really odd for me, too, because I just never go to the doctor normally.
-
Micro -
I don't know a whole lot about Cat scans vs MRIs, but if it were me I'd insist on the MRI with contrast.
But then again, I have insurance that would pay for it - and everyone might not have this choice.
Just my 2 cents,
Jan
-
Normally, I would feel the same way. Let me explain keeping in mind that I never go to the doctor...
Early last year, my stomach started swelling and then going back down after 3 or 4 days then swell again and never any pain. I was extremely exhausted, too, so went to the GP (gen. practitioner). He said he was pretty sure it was my thyroid, but would like to have a abdominal cat scan with contrast. He took some blood, sent off for the results and schedule the cat scan for a couple of days later.
The blood test results came back first and indicated that I needed thyroid meds. The cat scan then came back and showed absolutely nothing wrong. About 2 weeks later, the swelling stopped and has never returned. Paying for that cat scan was a very large burden at the time. That's just one instance where he went crazy with my money instead of being any kind of conservative. I won't say never, but it is highly unlikely that I'll ever return to his office.
So now I've got this guy who is maybe TOO conservative...kinds got what I asked for. LOL
Anyway, I am going to turn 60 in May, so when the thing with my heart and the overwhelming dizziness ensued, I'm rethinking everything and not making decisons anymore without careful thought. Also, my bills are starting to come in from the hospital and all the testing that was done on my heart and I am MORE than overwhelmed with the cost of it all. I don't feel right now that it is life threatening, so I'll gladly join the W&W's and soak up more info here.
-
Hi There,
I'm a real newbie too. I have dizziness that comes in waves. Sometimes it's just an annoyance...other times I need to stop and regroup. It's a drag, but I'm learning to live with it. I take my meclazine before I get out of bed in the morning, wait about a half an hour, and I find I can get up a little bit better. I also seem to have more symptoms when I'm tired.
Molly
-
For what it is worth...my former ENT wanted to watch and wait ( I had seen him a year earlier and my hearing did not get any worse but I was starting to have hemifacial spasms) but by chance I went to my chiropractor and explained my symptoms. She told me that I should get an MRI ASAP. I went to a Neurologist and got an MRI and they found an AN 2.5cm. Had my surgery a month later. I am glad I got the MRI when I did, only sorry I didn't get it sooner. ::)
-
Excellent point.
I'd forgotten just how many ANs go undiagnosed and for how long.
The sooner you know if you have one, the better IMO.
Jan
-
Holy Moly! I want to stick my head in the sand and run away! The more I think about how dismissive this doc was, the more concerned I am. There's an ENT clinic not far from where I work who is listed as specialists in AN's on a google search. When this whatever-is-it-is sent me to the hospital, the neurologist that ordered the brain scan wanted an MRI and I begged off. At the time, because of my experience with my GP wanting a scan for everything under the sun, I begged off. However, since the hearing test doc is so concerned and positive that an MRI would be ordered, I'm going to have one. I'll check today and see if the clinic is on my insurance and go to the neurologist if they aren't. I can't live "normally" w/o knowing.
-
Hi Micro
Welcome to the forum.
The first ENT I went to told me to get use to the hearing loss and get hearing aids b/c my hearing loss was due to old age. But I was only experiencing hearing loss (sometimes complete) on one side. Then I insisted when I saw my GP to send me to another ENT in the city for a second opinion...low and behold...he ordered an MRI with contrast and voila, there is a booger in my head. He is being evicted on April 7....
JO ;D
-
Yes you HAVE to be your own advocate in health care. Go for it and make sure you get that CT with contrast. It is YOUR life!
Maureen
-
The first ENT I went to told me to get use to the hearing loss and get hearing aids b/c my hearing loss was due to old age.
Hi again MSF! I received the same response as Jo (tenai98)- and i was about 40 years old at that point!
Now - alittle older and alittle wiser - i just wanted to make sure i wasn't imagining the whole thing.
I was actually relieved when i read the MRI report - no, i got tired of waiting for the doctor to call, so i went and got a copy of the report myself.
Then the doctor calls me a day or two later - i am driving in my car, all alone, on the way to another test for another doctor, and my husband was out of town for a week.... I told him THANK YOU for being patient with me and ordering the MRI w/contrast - and since i know the basics of AN, for now, i will W & W. It almost sounds silly the way i say it now!
Anyway - i know you will make the right decision when you are ready.
I am wishing you all the best!
Take care and keep us posted.
Sue
-
Looks like I'm seeing the neurologist this afternoon. Called yesterday and I guess they must have had a cancellation or something. He isn't a surgeon, but the one who wanted an MRI in the first place and is who told me he thought it was my ears. I feel better better now. Just want an answer.
-
MSF,
I will be thinking of you - good luck with your doctor visit and keep us posted!
Sue
-
Hi there,
Good luck with your appt. Hope you get some answers. Keep us posted.
Vivian
-
Well, the neurologist certainly isn't wasting any time and if he doesn't find anything with all he's doing, I should live to be 300 years old.
I have to call on Monday to schedule an MRI with and without contrast, an MRA of my brain and an MRA of my neck. He wants to rule out a tumor in my ear and brain and rule out stroke. The MRA is the same as an MRI, but with show any problem in the blood flow to my brain.
He wants me to eliminate as much salt in my diet as possible and gave the example that if I open a can of green beans, I have to wash them off before cooking them. I failed to ask why. Does it have anything to do withe the tests?
-
Washing your veggies before cooking will reduce the salt that was added during the canning process....I myself never use tabel salt b/c we ingest alot thru other foods..ei..like the canned veggies...
JO
-
I understand that part, but wondered if the no salt thing was for one of the tests or for one of my possible conditions. Should have asked, but didn't. I don't add salt either.
-
Hi,
Too much fluid in the middle ear can cause symptoms similar to an AN. Sometimes diuretics "water pills" are prescribed in an attempt to reduce the fluid. I'm thinking that your doctor wanted you to reduce salt intake to minimize the possibility of too much fluid being the problem. If my first MRI was negative, my doctor was going to prescribe a "water pill" to see if that would help. Since my MRI showed an AN, a different treatment path was followed.
Sounds like your new doctor is opening the gate to a diagnosis, so they know better how to help you. Good luck.
Best Wishes,
Janet
-
Thank you, Janet!
-
Hi, microsoftfree -
did you get a date for that MRI yet?
Jan
-
Thanks for asking! Had the MRIs (plural) today! I guess I should have started another post? Here's the link...
http://anausa.org/forum/index.php?topic=9017.0 (http://anausa.org/forum/index.php?topic=9017.0)
-
Thanks for the link. I missed it; haven't been on the forum in days.
Hope your results are good. I'd definitely get a copy of the written report when it's issued.
Let us know the outcome, please.
I'm hoping for the best,
Jan