What should I do?

[samantha]

As a follow up to my recent post where I didn't have an  AN on a non-contrast MRI, but was told my symptoms were due to migraine and basically told to go away. (having not seen my MRI films either)

3 days ago, raging tinnitus back in my left ear (after it had gone away about a month ago), really heavy, heavy left ear. When I stand with my eyes shut I feel as though I'm going to fall over, and I feel unsteady and exhausted the rest of the time. My own voice is reverberating (sp?) in my head if I raise it at all (like when calling my dog in the field), and after I come off the phone (and sometimes just when it feels like it!!) I have a clicking in my ear that I can actually 'feel' in my head.  I am an otherwise fit and healthy 32 year old, with no conditions, no issues, no allergies no nothing!! I don't smoke, I'm not overweight, I eat well etc etc etc.
OK - I may not have an AN (has anyone's ANs been missed on an MRI??) but I really can't see Migraine doing all this.  Does anyone have any idea what all these symptoms could be (I've had them all since July last year, apart from the tinnitus which came and went a month ago then came back 3 days ago)?
Has anyone had tests for any 'bony' problems in the head/ear/neck/jaw for these symptoms? It almost feels like there is a bone or something rattling around in my head/ear sometimes!!!!!! 
Could it be related to some neck/jaw problem??
What should I do? Surely there isn't much else to test when the MRI was negative?
Sorry to ramble on, but I feel the people with the most experience are all you guys.

Sam.

[ppearl214]

Hi Sam,

Oh, it could be many things and really a tough call.

Lemme ask you this:

1.  Has your primary care physicain ordered any lab work for you?
2. Are you open to getting a 2nd opinion from another dr
3. Will your primary order you a head MRI WITH contrast?
4. Have you checked with your dentist regarding TMJ?
5. Are there migraine sufferers in your immediate family?

Those are just a few questions to start... there are so many more than can be asked (sure others here will also ask).

May also be worth checking into headache clinics in your area (not sure where you are located, but there may be one available at a large city nearest you).

For me, the scans are the trick. They can also look for blood vessel contrictive issues, as well as so many other things....

I can only offer up these questions to start... I know others here will also be able to help.

Hang in there.
Phyl

[Denise]

Sam,
Very Very, sorry to hear about the continuance of  your irritating symptoms. 

All I can suggest is get a second opinion, and an MRI WITH CONTRAST.  It is my understanding AN's are hard to detect without contrast.

Denise

[Jim Scott]

Sam,

Very Very, sorry to hear about the continuance of  your irritating symptoms. 

All I can suggest is get a second opinion, and an MRI WITH CONTRAST.  It is my understanding AN's are hard to detect without contrast.

Denise

I want to echo that very valid suggestion from Denise.  An MRI scan with contrast[/color] is the only really definitive, reliable method of detecting an Acoustic Neuroma.  If no AN is shown following an MRI with contrast - as determined by a physician/reader who knows what he's looking for  - you'll need to get a second opinion as to the possible source of your symptoms.  You could have something fairly simple to diagnose and treat - or something more serious.  You must solve this 'mystery'.  Your health is at stake.

Do not allow a physician to 'dismiss' you when you are suffering - but since we can't force medical professionals to be diligent as well as compassionate, you may have to search a bit to find a doctor who actually cares about your well-being.  They do exist.

[Larry]

Sam,

I echo my fellow posters advice. Time and time again, we see and hear people being mis-diagnosed. Get a second and even third opinion if you need to. Don't worry about upsetting your first "quack".

Some of the medical fraternity concern me greatly. I had an AN removed and I knew it came back a few years later. The surgeon told me that the radiologist's report was wrong (they said it had returned). the surgeon ordered two more MRI's but later had to give in and said, yes it had returned and then told me that he didn't actually remove all of the tumor in the first place. After the initial surgery, he told me that he did get it all out.

That one, lied to me on more than one occaison so I have a mis-trust with these guys.

Get another opinion and do a contrast MRI.

Laz

[lmurray69]

Get a 2 nd or even a 3 opion..I was 2 yrs and then had a tia(mini strok) they did mri with contrace and found mine..I am deaf on AN side. wear aide in rt ear. I have migrains, just like most of us. anddizzness..get checked

[thornapple]

As a follow up to my recent post where I didn't have an  AN on a non-contrast MRI, but was told my symptoms were due to migraine and basically told to go away. (having not seen my MRI films either)

3 days ago, raging tinnitus back in my left ear (after it had gone away about a month ago), really heavy, heavy left ear. When I stand with my eyes shut I feel as though I'm going to fall over, and I feel unsteady and exhausted the rest of the time. My own voice is reverberating (sp?) in my head if I raise it at all (like when calling my dog in the field), and after I come off the phone (and sometimes just when it feels like it!!) I have a clicking in my ear that I can actually 'feel' in my head.  I am an otherwise fit and healthy 32 year old, with no conditions, no issues, no allergies no nothing!! I don't smoke, I'm not overweight, I eat well etc etc etc.
OK - I may not have an AN (has anyone's ANs been missed on an MRI??) but I really can't see Migraine doing all this.  Does anyone have any idea what all these symptoms could be (I've had them all since July last year, apart from the tinnitus which came and went a month ago then came back 3 days ago)?
Has anyone had tests for any 'bony' problems in the head/ear/neck/jaw for these symptoms? It almost feels like there is a bone or something rattling around in my head/ear sometimes!!!!!! 
Could it be related to some neck/jaw problem??
What should I do? Surely there isn't much else to test when the MRI was negative?
Sorry to ramble on, but I feel the people with the most experience are all you guys.

Sam.

Hey, Sam...I am another migraine vertigo person, and I share your frustration.

There is a lot of good reading about migrainea and vertigo/ear problems here: http://www.mvertigo.org/ But I know what you mean. I have atypical migraine; migraine without the headache. Those with headache say "lucky you", but it almost as horrible as headaches, and just as frustrating, because it took thirty-five years to get it diagnosed, so that is decades of illness.

You really do need the contrast on the MRI. That is what it took to finally get something to show up on my MRI.

[mll]

Could it be meniere's disease? I was diagnosed with Meniere's after complaining of dizziness, ringing in my right ear.  I would definintely keep on the doctors until you get a diagnosis.

mll

[BevM]

Just to echo the opinions of our forum; Please insist on an MRI with contrast!  Your symtoms are so AN!  ( However, symtoms do vary from person to person) some have few symtoms with even larger tumors and some of us (me) have significant symtoms with smaller tumors.  Many of us had to really push/drag our doctors to do more testing.  Don't give up until you have explored all the possibilities of your symtoms.

Bev

[Mark H]

Hi Sam,
I've had symptoms kinda like that for years. My MRI's (with contrast) kept coming up clean and most of the doctors figured it was all in my head. Finally on an MRI 3 years ago they thought that just maybe they could see something but it was so small they weren't sure if anything was even there. 2 years ago there was something there, but too small to tell what it was. After last year's MRI they started calling them bilateral AN's, but still real tiny, about 2mm each. The report said no significant change from the last MRI but this time they called them AN's. I'm hoping to find out Tuesday when I go see my Dr, (a new one I haven't met yet as my last one quit and moved. I had this year''s MRI last Tuesday and haven't heard anything so I'm figuring there has been no changes again. So as in my case it just might take time for anything to actually show up. I've had the tinnitus and balance issues for a long time (also have NF1) but it wasn't 'till last year that they finally diagnosed it as AN's. 
Mark

[samantha]

Lemme ask you this:

1.  Has your primary care physicain ordered any lab work for you?
2. Are you open to getting a 2nd opinion from another dr
3. Will your primary order you a head MRI WITH contrast?
4. Have you checked with your dentist regarding TMJ?
5. Are there migraine sufferers in your immediate family?

1. Absolutely no lab work at all....but I don't feel 'ill' so I suppose there is no reason to check my bloods.
2. I am waiting on my films to be sent to me, then I'm going to pursue a 2nd opinion HOPEFULLY an MRI with contrast
3. As above...but I'm in the UK, so the health system is a little different here.
4. I have a routine check-up at the dentist at the end of Jan, so I'll ask about it then. Would it cause all the symptoms?
5. Yes, including myself!!!

Thanks everyone again for all your advice and help. Like I say, I am STILL waiting on my films to be sent to me. the service has been deplorable, so i've not been filled with confidence at my "diagnosis"(if you can call it that!). I phoned them again on Thurs last week, and STILL no follow up phonecall or films received. (i've been waiting since the 18th Dec for the MRI films, after waiting till then from the 21st November for the results!!!!!!!!!). When I was sitting in the waiting room on the 18th waiting to see if I had a tumour, the doc was still trying to locate my results!!! Then when I did go into the consult room to find out; the doc had the cheek to take a call on his mobile before telling me!!!! How RUDE was that?
Menieres was ruled out, due to the fact I don't have spinning vertigo or nausea/vomiting and when they did a balance check on the 16th October, I was very stable that day! (however, my tinnitus wasn't there that day either).
I really would like to speak to a doctor that gives a c***, and who actually does what they say they will. There doesn't seem to be special centres (like House) in the UK, like you have in the USA. I looked up their website and actually found lots of info on hearing disturbance and possible causes, that the doc didn't even mention!
The guy didn't even give me any differentials for what my problems could be...just said "probably due to migraine..the symptoms should go away". Great service eh?!
I think because my symptoms are 'small' and not causing real illlness or pain, I tend to brush them off and am not pushing the doc like I would be if I were very ill/in pain. I'm heart-sick of having to chase up the hospital for even the simplest of things! I shouldn't bloominwell have to! 

Thanks again,
Sam