Waiting on MRI, questions about symptoms

[GallopingSally]

Hello:

I have had AN symptoms for about 7 years, and am having an MRI with contrast on February 1st.  Seven  years ago I had neurological hearing loss in my right ear and balance issues.  The MRI showed nothing.  Since then I have had issues with vision (blurring), and a particularly hard time with dizzziness when I turn my head quickly.  I do not even dare try to turn my body in a circle   I also have random moments of dizziness/off balance where I find myself grabbing for the wall or counter.

I wound up back at my ENT about a month ago for constant ringing in the right ear.   Audiogram still shows mild hearing loss in that ear.   The ringing has become so difficult to bear that I am trying the Xanax protocal at night just so that I can sleep.   However, I wake up with a headache and just feeling "off."   Still, I suppose it beats waking up several times a night from the noise in my head.

My biggest fear was that this is MS as I am also having some mild speech issues - mostly forgetting words and/or knowing the word but being unable to say it.  My Neurologist has classified all of my symptoms as "back of the brain" issues.  She feels that if this is an AN it started 7 years ago and was just too small to be seen.  She is 99% confident it is not MS.

Question is....have others had these similar symptoms?  And how do you deal with the wait for the MRI? 

Thanks,

Kathleen 

[CHD63]

Hi Kathleen and welcome to this forum.

Your symptoms do sound very typical of an AN, but they can also be caused by other things ..... Meniere's disease comes to mind as one.  The only way (as you already know) to be sure is through an MRI with contrast, which you are wisely having done next week.

As for dealing with the wait ..... you are doing the right thing to research the possibilities.  However, I have to advise you not to jump to any conclusions based on what you find on the Internet.  There is so much conflicting information and downright inaccurate information out there.  Try to just relax until you have the MRI report.  There will be plenty of time to complete your research when you know what the diagnosis is.

Although I really hope you do not have an AN, it is almost always benign and treatable.  Be sure to let us know what you find out.  If it is an AN, we are all here to be as much support as we can be.

Many thoughts and prayers.  Clarice

[Deekon]

Hi Sally,

I have not been diagnosed with an anything but I have my MRI tomorrow. I have been waiting two weeks for it, so I know the anxiety is tough. I decided to stay off the forums and internet and just relax before the scan. Although I hope it comes back clean, I have something then I have it and there is no sense worrying about it. I know that's easier said than done, but I was able to relax. Also big cookies help! Good luck with your MRI, I hope it comes back clean and you figure out what's troubling you.

Deek

[GallopingSally]

Thanks....my ENT and Neuro have pretty much ruled out Meniere's as the Meniere's usually happens in "attacks" that last for hours or even days.  I guess I just have to wait until the 1st.  Deekon please do let everyone know about your MRI....I really want to know if the MRI techs will tell you anything or if you have to wait for a call from the Doc.  My Doc appointment is the day after the MRI. 

Kathleen

[Deekon]

Lucky for me, I get the MRI and then go up to my neurologist and look at it with him. I am glad I don't have to wait to see what's going on, but at the same time that is going to be one intense elevator ride!

[suboo73]

Hi Kathleen,

I want to add my welcome to the Forum!
Sorry you have been dealing with symptoms for awhile - i hope you get your answers with the MRI in February.
I am so glad your neurologist is very confident that you do not have MS...however, i am sure the dizziness, tinnitis, etc can be debilitating.

Waiting for the MRI - this is often not easy for many people, including me.
I try to concentrate on the fact that it is a non-invasive test, one that will give me information.  Also, I have my ENT visit the same day for instant results.
I am fortunate that i can do this at my medical facility - i figured i waited for over 12 years to figure out the story, and don't want to wait anymore!

My thoughts and prayers will be with you on Feb. 1st.

Sincerely,
Sue
 

[GallopingSally]

Hello Suboo and thanks.  So are you a watch and wait person?  I see that you were already diagnosed but nothing about treatment.

Kathleen

[Jim Scott]

Hi, Kathleen, - and welcome to the ANA discussion forums.

I don't have anything of substance to add to the thread except a suggestion that you might wish to schedule an appointment with your doctor as close to the scheduled MRI as possible to avoid increasing your stress over the unknown.  In most cases, MRI techs won't tell you anything (they're not doctors and it's not their place, as a matter of protocol) but sometimes a tech or nurse will signal bad news by their body language and/or what they don't say - but don't depend on that happening or become frantic if the tech looks unhappy - he/she could just be having a bad day.  Acoustic neuromas are almost always benign and, as you already know, treatable.  Should you learn that you have an acoustic neuroma, we'll be here to inform aand support you as you move forward with treatment.  Until then, I suggest that you try not to obsess over the unknown and keep busy until the scheduled MRI.

Jim

[GallopingSally]

Thanks Jim.  My MRI is Tuesday at 4 PM and the Neuro appointment is the next day at 1:30.  It is all just so frustrating because 7 years ago I went through this.  Still, ignoring my symptoms for 7 years has gotten me nowhere:)

I forgot to mention that my ringing ear also feels as if it is full of water all the time, especially in the last month.  I just try not to focus on it, but does anyone have a better way to deal with ringing/fullness?

Kathleen

[suboo73]

Hi again, Kathleen,

Yes, I am in W & W - I decided since my symptoms are mild tinnitus and mild hearing loss, I will just deal with it.
If things change, I will strongly consider CK [Cyberknife].  I don't think I want to have surgery, but that is just me.
My ENT said he recommends treatment if the AN is 1.5cm or larger.  So for now, I decided to continue in W & W.

Although I have not had serious balance issues, I have had one vertigo experience a year ago, very scary!
In the past I used to say my 'knees' were not so steady anymore, since I was a cheerleader in high school, played the organ for several years, and had some numbness in the knees.
Perhaps this contributes to some unsteadiness; but maybe I have some wobbling due to the AN as well.
At this point, I have not had any special testing for balance, though I did see one neurosurgeon at John Hopkins and he did some basic tests in his office, like reflexes, standing on one leg, etc.

It sounds like you are doing everything you need to do - educating yourself and getting the tests you need.
I hope you find some answers next week!
Prayers all around and please send an update when you can.

Sincerely,
Sue