Awaiting official MRI analysis

[AmandaKay]

So, here's my story.

In October of 2014 I was walking through my kitchen when it felt like my left ear filled with water. This sensation persisted. My doctor used the word "perplexing" and "mysterious." She didn't take this very seriously, and quite frankly, neither did I. It just felt like there was water in there. Finally, months later... I had my first ENT appointment, this was May 2015. All was well when I left my first appointment. But exactly three days after my first ENT appointment, I was overwhelmed with nausea and dizziness... like I had just walked off a roller coaster. I missed two days of work because as soon as I got out of bed I couldn't do anything but get back in. The world spun (and is still spinning) 24/7. Then came the ear pain. Luckily, this only happens periodically, but boy, is it enough.

ABR results came back with typical results for AN (a misbalance in wave 5). My ENT didn't scare me, it took a little Googling to really get me nervous. The ENT said, "it might be a growth, but if it is they are benign and slow-growing" and then proceeded to talk about other things so that it was almost an aside. Overall, best bedside manner pre-diagnosis a gal could ask for.

I had to wait two weeks for an MRI. (Is this normal?) I had it today and they sent me with the CD. So I popped that sucker in and did my own little analysis. The very first image showed something that could've been pulled off the results list for "MRI of acoustic neuroma" image search. I know I'm no radiologist, I know I could be freaking myself out, but honestly... I've done a lot of research over the past month and every single symptom, every single indication of an AN matches with my recent experience. And if it's not AN, then I'm just plain crazy or the bearer of another crazy medical issue unexplained and uncontrolled. Yippee. So, good and bad.

I have a balance test this coming Monday, but I can't see my ENT for THREE MORE WEEKS! I hope they will get the results and call me in sooner, but I seriously doubt it. Scheduling with him is a nightmare... which is a blessing and a curse, I suppose (you want someone in high demand, right?).

I've learned that I need to just deal with the dizziness, as NOTHING helps it. And looking at the treatment options, it might be something I have to live with for awhile. The headaches.... they never end. But occasionally I'll have a day without. Honestly, I didn't realize I had as many headaches as I do until I started a headache diary. It's pretty much everyday, and they seem to alternate between behind my affected ear and above my right eye (maybe the latter is tension from all the stress this has caused me). I can't always stand very long. And walking feels like going through the rotating barrel at the carnival. Driving is a strange sensation as well. Luckily, I've never come close to fainting or falling, otherwise I certainly wouldn't be driving.

Has anyone encountered a homeopathic treatment for the dizziness? Every pill I've taken just makes things worse.

I hate this not knowing. I hate the waiting. But I'm glad this discussion board exists. I've read a LOT of the posts on here, and they have been a great comfort to me knowing there is a network of folks I can talk to and reach out to.

I kinda hope I'm crazy.

Best,
Amanda

[Janey]

AmandaKay,
So sorry you are having these issues, and that you are having to put in time before you know
if you truly are a member of the "AN" group.  The only advice I can offer is to take one day at a time.
If it is an AN, you will most likely  have pleanty of time to decide your course of treatment. 
I have been reading this forum now for months, and learning all I can about these troublesome
tumors.  I am on the watch and wait plan, but my last MRI showed some growth, so I
might be closer to becoming more pro-active with treatment.   I have not experienced the headaches
and dizziness that you describe, but I feel empathy for your situation.  My symptoms are hearing loss,
slight balance issues, and never-ending tinnitus.  Good luck to you and keep us all posted on
what happens. 

[ANGuy]

You say nothing helps with the dizziness, what has your ENT prescribed for it and what have you tried?

[alabamajane]

Amandakay,
Welcome. Sounds like you are having bad cases of vertigo. An antihistamine MAY help some. I never had them.

Too bad you have to wait so long for an answer! Are you able to get the radiologist report that goes along with the  MRI? You will have to ask for it and they may not release it to you until Dr views it,, but that will tell you what  he read.
You may also try going to your primary care Dr for help with vertigo. Good luck! Jane

[arizonajack]

I had to wait two weeks for an MRI. (Is this normal?)

That's about average.

I had it today and they sent me with the CD. So I popped that sucker in and did my own little analysis. The very first image showed something that could've been pulled off the results list for "MRI of acoustic neuroma" image search. I know I'm no radiologist, I know I could be freaking myself out, but honestly... I've done a lot of research over the past month and every single symptom, every single indication of an AN matches with my recent experience.

You don't have to be a radiologist to recognize that white spot on the MRI image. It's all laid out for you on google images - every conceivable shape and size.

In fact, see if your MRI images have centimeter scales on the sides and you'll be able to do a rough calculation of the sized of your tumor.

As to whether it's an AN or not, if it walks like a duck and quacks like a duck, it's a duck. Alternatively, if you hear hoofbeats, think horse not zebra.

Anyway, welcome to the club that nobody wants to be a member of. You'll get plenty of support and good information here. Occasionally some humor because, without humor, this would be a very dull place to visit.

[PaulW]

Hi Amanda,
The good news is that, the symptoms you are describing are not typical for an Acoustic Neuroma.
Most people do get the dizzies, but severe vertigo like you are describing is not common as a first symptom. Likewise ear pain, is unusual.
There are many things that it can be.... And most of the things I can think of are far less bothersome than an Acoustic Neuroma.  It maybe as simple as an infection.. Some of these infections last months, and are not perceived by the patient to be an infection. There are also cysts and other weird benign growths that cause these sorts of problems which often resolve on their own, or require far less invasive surgery than an AN

Good luck with your MRI, please let us know the results...
As the symptoms you describe are not typical first symptoms, I think you have a very real chance it will be something other than an AN