undiagnosed

[msmaggie]

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

[leapyrtwins]

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!)

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 

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 

[microsoftfree]

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.

[leapyrtwins]

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

[microsoftfree]

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.

[MissMolly]

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

[nteeman]

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.   

[leapyrtwins]

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

[microsoftfree]

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.

[tenai98]

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

[moe]

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

[suboo73]

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

[microsoftfree]

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.

[suboo73]

MSF,

I will be thinking of you - good luck with your doctor visit and keep us posted!

Sue

[Vivian B.]

Hi there,

Good luck with your appt. Hope you get some answers. Keep us posted.

Vivian