undiagnosed

[microsoftfree]

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.

[ppearl214]

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

[Pooter]

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

[wendysig]

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

[suboo73]

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.

[microsoftfree]

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!

[Jim Scott]

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

[Sue Vogel]

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

[sgerrard]

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

[suboo73]

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! 
(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

[microsoftfree]

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?

[Kaybo]

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 

[Sue Vogel]

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

[DLM4me]

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. 

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).

[microsoftfree]

Is it normal for the dizziness to come and go?