Probable acoustic neuroma

[ajgordish]

Hello.  Not sure I will be joining the ranks just yet, but MRI without contrast showed a possible AN or something that could represent an AN.  What the findings actually state is there is a loss of the expected CSF fluid signal seen within the right internal auditory canal, lateral aspect could represent a vestibular schwannona.  So....another MRI with contrast gas been ordered.  I guess my doctor thinks I am made a money and can afford all these MRIs! 

I have no hearing loss, but have glad vertigo and dizziness and other balance issues for 10 months.  I've been to several doctors, had many tests which ruled out BPPV, Mineres disease or any other ear issue.  However an abnormal ENG did show there is spontaneous nystagmus and my dizziness is related to the brain....so was sent to neurologist.  At first he thought migraine associated vertigo MAV...but decided to order the MRI.

I kid you not, after 4 days of waiting for results, he called me St home and told me a tumor was found and Zi needed to go to a specialist that dealt with AN.  I went to the specialist only to be told there was no tumor...only possible tumor, but I would need an MRI with contrast to get a better picture of what is going on in my ear. 

I have ear fullness, tinnitus, pulsatilla tinnitus, dizziness and just off balance.  All these issues are daily.  I have had 11 severe vertigo attacks, the last one was in January.  Some days are better than others....rainy days are the worst.  I may start Topomax to treat these symptoms, but in the meantime I am wondering if anyone rise had these symptoms with their AN.  I wonder what this lack of CSF fluid means. 

Any thoughts?  I will repeat the MRI next week, but with contrast this time. 

Thank you so much.  I'm going nuts over this. 

Aretta

[CHD63]

Hi Aretta and welcome to this forum .....

Although we all hope it does not turn out to be an AN, your symptoms and the report on the MRI without contrast are leaning in that direction.

I guess it is the cost, but it always baffles me why an MRI is ordered without contrast when an AN is suspected (or wanting to be ruled out).  Small ANs are frequently missed until the contrast dye is used and then it will glow like a lightbulb.

Many thoughts and prayers as you await the MRI with contrast next week.  Please be sure to let us know what you find out.

Clarice

[dnamama]

Clarice, I am with you. It seems to me that MRIs without contrast are fairly useless when an AN is being ruled out or in and are a waste of health care dollars! When symptomatic I would not feel confident going by an MRI w/o contrast even if it showed nothing.

Aretta, we are in the exact same situation with our 22 y o daughter. Impression by radiologist is AN, but MRI w/o contrast was ordered. Now ENT has ordered MRI of canal with contrast and she is getting it tomorrow. She has had no vertigo, but has had balance disorders, some transient numbness, hearing loss and lots of headaches and fatigue. I wish you the very, very best and will be following your results and progress and will share my daughter's results as well. Take good care of yourself and I hope you have an answer and a resolution to your symptoms very soon!

[PaulW]

There are MRI's without Contrast and MRI's without contrast..
I have had a lengthy discussion with a radiologist on this..
Apparently a T2 Weighted Fast spin Echo imaging in a 3 Tesla Machine will identify all vestibular schwannomas.
Older machines and T1 weighted images will not find all AN's
This is a change from how it used to be where T1 weighted images with contrast was the only sure way of identifying an AN.
So if the ENT has specified the test properly without contrast they will find it in a new machine   

[Blw]

Paul I think the newer machines may not be as common as the older ones and I think for all ANs you will eventually need the contrast for historical records of size change. If I recall, the 3T has a bigger magnet so you can take smaller image slices, which may be why contrast could be optional initially. Also, like everything else, you need people who know what they are doing and know what to ask for. My ENT runs a hearing center, so I got every test in the building and free automobile undercoating to boot. My insurance didin't cover a couple, so they really have you over a barrel, but the7y did generate a lot of data. There is another test, I think it is ENOG, that also has a classic pattern for ANs, that should tip a doctor off to order an MRI with suspicion of an AN                                                                                                                      -.

[ajgordish]

Thank you for your responses.  MRI w/ and w/out contrast has been ordered.  I will actually go in a few weeks.  Gives me time to stew over it I guess.  I had read that in the beginning stages of an AN symptoms of dizziness and vertigo may be present.  Seems like the bigger it gets, you have less of this and then hearing loss sets in.  Thankfully right now, I don't have hearing loss...though the ringing in my ear is driving me nuts.  Its worse at night when it's quiet.  I probably have it all the time, but with out noise I don't notice it so much. 

So...we'll see I guess.  In the meantime, I'm so glad I found this site!  What a great place to come and learn from each and share our stories. 

Ironically, we have an adopted daughter who has NF1, she had ringing in her ear at one time, so she had an MRI to determine if she had an AN.  Even though they are more common in NF2, it was just something they were searching for.  AT the time I read a lot about ANs.  Because of all that research I don't feel like this is such a foreign thing to me.  I am 52, so my main thought has been....aren't I a little old to be getting this?  I suppose ANs do not discriminate against those of of us in our middle age years.