Newbie needs some advice & support . . .

[notacylon]

Hi, I might not belong here. I'm not trying to pretent I have AN, but I don't know WHAT is wrong, and I'm wondering if any of my symptoms might sound familiar to any of you. I've posted on a Meniere's board too, and they thing I probably have MAV.

Just a little history: I visited my GP last week, who sent me to an ENT (who had a cancellation for the very next day). My ears were tested, and there is a small amount of hearing loss on the left side. There is also a horrid, shrieky, high-pitched, loud, driving-me-insane buzz in the entire left side of my head. It goes & goes & goes, non stop, 24/7. I have minor headaches that come & go through out the day, mostly on the left side. The weirdest thing is that my left eye twitches on & off all the freaking time. It's been doing that for a week now. I realize that fatigue causes that, and I'm definately VERY tired all the time, but I'm getting sleep (with some help from my little friend Ambien).

I've had tinnitus off & on for years & years. I thought it was normal, that everyone got it. I also have had way out of the blue dizzy spells that last for only a sencond or two. I assumed that was normal too, and I've always had low/normal BP. Then 3 wks ago I got a migraine. Before the head pain even started, I was hit with such extreme dizzyness that I could hardly walk or move my head. I had trouble keeping from throwing up. I was down & layed out for 3 days. Sometimes when I got up, the room would spin & the walls & floors would tilt in crazy directions. The migraine went away, but the persistant tinnitus stayed, as well as the hyperacusis, and a slight bit of dizziness (but that's minor).

I had my MRI yesterday. How long does it usually take for results? The ENT office says "a couple of days," but is that until THEY get it back from the imaging center, or when I get clued in on the results?

I feel like I'm pretty much babbling. I'm tired & I'm going to hit the sack now. I appreciate any responses.

[ppearl214]

hi and welcome.  Sounds like you need some direction and what I can offer is this.. the MRI is the key. My hope is that they used contrast when doing the MRI, as it is the best way to see a "mass", such as an AN. My hope is that you don't have one and obtain answers quickly. Yes, it usually takes a day or so for the MRI read to be done, so you need to hang in there and pls keep us posted what the results are. If it's an AN, there is a wealth of info here......

Wellness wishes to you... and again, welcome.
Phyl

[er]

Hello notacylon,

Phyl is right, MRI will give you the answer.
And you are not babbling on, you need to let your emotions out and you are in the right place. Like Phyl say keep us posted.
And good luck
eve

[leapyrtwins]

I can only echo what Phyl & Eve said.  You may or may not have an AN - some of your symptoms are similar to AN patients, but sometimes AN patients have lots of different symptoms.  The only way to tell for sure is by having an MRI.

The results usually take a day or two to get to your doctor.  I'm sure you'll be hearing from him/her soon.  Try to relax until then.

Good luck and let us know what the results are.

Even if you don't have an AN, you are certainly welcome here 

Jan

[Jim Scott]

Notacylon:

Thanks for stopping by.  I was sorry to learn about your discomfort and the lack of a diagnosis.  As already noted, the MRI will likely help explain what is happening to you.  If taken with 'contrast', any abnormality should be obvious, especially an Acoustic Neuroma.  If you had th MRI on Wednesday, you should know by Friday...Monday at the latest.  If no word by Friday P.M., I would consider calling your doctors office - before closing - to see if the results are available.  Let them know you're in pain - and concerned. 

I sincerely hope you don't have an Acoustic Neuroma but that the source of your pain will be found and corrected very soon.

Please feel free to post here and let us know the MRI results, whether or not you have an AN.  Thanks.

Jim

[notacylon]

Phyl, Eve, Jan, and Jim, thanks SO MUCH for your kind & warm responses. As horrid as it sounds to deal with AN, it must be the "silver lining" to have each other like you do here on this board. I've seen so much attention & thoughtfulness here just in the last couple of days.

As for my MRI, I hope there will be results tomorrow! I might very well go mad if there aren't (that is if this shrieking in my head doesn't push me over the edge first). Yes, there was something used for contrast. A little more than half way through, they stopped, pulled me out & injected me before doing a few more scans. One thing I worry about is that they really stressed to me how IMPORTANT is was NOT to move my head. It was fixed in so snuggly it couldn't be much moved anyway, but . . . when the guy giving me the injection asked a question I started to nod my head. As stupid as it seems, it was just a purely instinctive gesture. I barely moved my head before I remembered, but now I'm scared I could have messed the test up.

No new symptoms, except I wasn't quite as tired today as I have been all week. In other words, for the first time this week I didn't nearly nod off at my desk. The other symptoms are still awful. I bought some earplugs today. I don't know which is worse though: having to hear every little sound with such awful sensitivity, or wearing the earplugs & being all alone with that awful screeching sound.

Hopefully I'll hear something tomorrow. If not, I'll take Jim's advice & give them a call.

[Sue]

Hi notacylon,

How do we know you are not a cylon? Hmmmmm?  

Don't be freaked out by the technician telling you not to move.  They told me that also.  That's true for everyone having a head MRI, and maybe every other body part MRI.  They have their way of doing things, and that's one of 'em. 

I had my MRI on a Thursday, I think, and my doctor called me on Monday morning.  My first thought was....oh my gosh, the neurologist is calling me personally! Yikes!  The good news is that they didn't cart you off to the emergency room right after your MRI.  So, they didn't think you had any sort of "emergent" situation going on.  I always took that as a good sign for me anyway!

Can't really advise you as to what is going on in your head, but you'll know soon enough and then you and your doctor will get on with figuring out what to do next.  Please come back and let us know what he/she said.  We are rooting for you and are so sorry that your symptoms are so dramatic. 

Huggles from Vancouver, WA USA

Sue

[notacylon]

Sue, you actually have a good point. With all this buzzing in my head, is it possible that I really AM a cylon? Hehehehe! 

[leapyrtwins]

Okay, I'm clueless here - and too lazy to find a dictionary (even an online one).

What is a cylon 

Jan

[Sue]

Battlestar Gallactica reference.  For all you non sci-fi enthusiasts.

They are the evil robotic entities wanting to wipe out humanity.

Sue in Vancouver, USA

[leapyrtwins]

Battlestar Gallactica reference.  For all you non sci-fi enthusiasts.

Thanks for telling me, Sue. 

I'm not a fan of sci-fi; it's just not my kind of thing.

I'm probably one of the few people in the world who never saw any of the Star Wars movies!

I guess I lead a sheltered life 

Jan

[Sue]

Jan, I found Sci-Fi when I was probably in Jr. Hi or so.  When I read escapist "literature" I REALLY escaped!  So, it wasn't hard for me, as a mother of an only child, our son, to take him to all the action/adventure/sci-fi stuff.  So, I saw the first Star Wars about 8 times, I think!  We've seen most all the movies that were summer blockbusters from Star Wars up to and including this  Mother's Day, when he took me to see Iron Man.  That was actually a pretty good movie.  A little Mother/Son bonding.  That's probably why my first thought when I saw the Gamma Knife machine, was Beam Me Up Scotty!  I'll even admit to two Star Trek conventions!  And I even have Scotty's autograph!  And I was president of the Library Club in high school.  Does that qualify me for "geekdom" or what?   Too bad I wasn't one of the really smart geeks, like Bill Gates.  But, alas, not I.

But, I haven't seen the newest version of Battlestar Galactica, even though it has gotten good reviews.  I just missed it somehow.  But, I watched the original TV show.  My son was little then, and he like the Cylons! 

So, Notacylon, we've hijacked your thread and now we're talking Sci-Fi here!  Sorry about that.  I hope you feel better soon.

Sue in Vancouver, USA

[notacylon]

Thanks for the laugh!! Jan, you need to find your "inner nerd!" Hehehe!! Just kidding. The fact that you didn't know what a cylon was is not a bad thing!

I can't type much because I'm reaching around my 3yr old, who wants to play the Schmansy shmashup game (or whatever it's called) from the Upside Down Show. I guess I"ll be nice & let him play.

I haven't spoken to the dr yet, but a nurse called to inform me that my results had arrived & the doc would call me either later that day or late Monday (after his surgeries). I said "so there's nothing you can tell me?" She said "hold on a moment . . ." Then she said (I think) "it says here 'no cochlear or vestibular abnormalities. Does that make you feel better?" "Yes! Thank you!"

Based on that, it looks like (to me) that it's not an AN situation for me, and that's good, but I still don't know why my head is making me crazy. This infernal buzzing is wearing me down, and the hyperacusis is awful. I met with work friends at a restaurant yesterday, and there was so much noise that it made it hard to decipher any one thing. I guess people stopped talking to me after I kept asking "what?" Plus I keep getting left sided headaches & eye twitches. I'm still at square one.

If there's anything of further interest from teh MRI, I'll let you know. Otherwise, I can only thank you for my brief stay here, and for helping me to feel so welcome.

Lydia

[Mama R]

I would just like to add a tad in case you are still there. When I was diagnosed with an AN a friend of my sisters surfaced with similiar symptoms to yours. She had constant eye twitching. It turned out she had a benign tumor similiar to an AN but less invasive, had surgery and was on her way in a much shorter time than us AN er's. So hopefully it will just be a small bump in the road for you. It would be nice to know your outcome..,By virtue of your e-mails you have been 'incorporated'   Take Care..

[Jim Scott]

Lydia:

I'm sure we all share your relief in the apparent good news that you (probably) don't have an Acoustic Neuroma.

I hope and pray that the actual cause of your headaches and discomfort can be found and corrected very soon.

Thanks for the update.  It's appreciated. 

Jim