New diagnosis

[Worriedandconfused]

Hi Everyone,

I have been newly diagnosed with a small acoustic neuroma, size 4x2x4 mm. Follow up MRI suggested in one year. I know it's very small but I am a complete and need to talk about this..

[gracey79]

I understand how this new news can be worrisome. I am still a w&w myself.  I was diagnosed in April and am due for my next MRI in October.   My mother was diagnosed with an AN a while before I was so I knew some things about them and that made it a tiny bit easier, but I shocked myself in my stages of understanding so far.  I went from " I can do this!" to " om gosh, information and reality overload."  I am told this is "natural" for most of us.  I am more than happy to read and share, feel free to send a message.  Praying for you.

[MG]

Hi,
I was diagnosed last year  and just had my second MRI. I was worried sick because I was having lots of dizziness like I did in the beginning of my journey with my AN. As it turns out I had a good report and it hasn't increased in size. I will go on with W&W and hope and pray for the same outcome next year. I am sending my thoughts and prayers to you all and if you have any questions please feel free to ask me.

Take care,
MG

[keithmac]

Hi Everyone,

I have been newly diagnosed with a small acoustic neuroma, size 4x2x4 mm. Follow up MRI suggested in one year. I know it's very small but I am a complete and need to talk about this..

So how are you now feeling about this...?

[Worriedandconfused]

Honestly, I don't want to sound like I'm in denial here but I just don't believe it. I was diagnosed by 4 doctors with vestibular neuritis. I have read many papers about inflammation( neuritis) being confused with a small mass, especially one as small as mine. Even cases where an operation has been performed only to find no sign of neuroma or finding some swelling.

The funny thing is, I was told I could cancel the mri but I decided to go anyways. The only reason I know what it said is because I work in a medical office and had it faxed right to me from the hospital. I haven't even heard from the ordering doctor, and that was 3 weeks ago. The receptionist knew I was very nervous to do an assured me the doctor would call if it showed anything. I'm trying not to think about it at the moment as I have enough anxiety to begin with... I had a good breakdown but I'm trying to put it out of my mind for now..

Also, I had a very obvious severe case of vestibular neuritis, when reading a description, it was like I wrote it about myself. Every symptom matched. That happened on May 16th and I have 95% recovered. I have no symptoms of a neuroma whatsoever. No hearing loss, no tinnitus, my audio gram was perfect and the ent questioned why I was even doing the mri( ordered by another doctor)

Anyways, that's my crazy story. Again, I don't want to sound like I'm in denial and I know I'm not a doctor. But this has ruined my summer so far and I'm back to nursing school in a month so I'm not going to cry about it anymore( for now!)

Thanks to anyone listening(reading)..any thoughts are appreciated 

[Worriedandconfused]

To add to that.. My mri with contrast didn't show "any definite enhancement of the lesion" and was best visualized WITHOUT contrast, which I though was quite interesting from reading all the stories on here..

[ANGuy]

Any Dr that orders an MRI and waits 3 weeks to follow up with you needs to be fired.  The other Dr, the one who didn't think you needed the MRI needs to be fired. 

Now to the other stuff.  I don't know if you have an AN or not.  Neither to the Drs you have now.  It may even be unknowable at this point even for the most experienced Drs out there. 

My situation is similar to yours in some ways.  The ENT's locally, three of them, rubbed me the wrong way.  They were making educated guesses and ordered an MRI.  The MRI shows, without a doubt in my case, a 1cm mass.  BUT, my symptoms are not consistent with my MRI.  A 1cm growth should not be causing the symptoms I am getting.  I'm asking these guys about this and they are dismissing my questions and saying "surgery".  Now, I'm supposed to let these guys cut me all the way to my brain stem and they don't even know what I stand to gain from a procedure like that at this point.

So, off to Duke I go to see a neurosurgeon who specializes in skull base tumors.  He spends a couple of hours with me and concludes that while I DO have a tumor,  he doesn't think it is causing my symptoms!  Keep in mind, I didn't suggest this to him, he concluded that on his own.  His next step was to refer me to one of his Duke colleagues, an ENT who specializes in VESTIBULAR DISORDERS.  He also does surgery, and radiation of skull base tumors.  Next month I am spending the day there getting an ENG and other tests to see if we can identify the source of my symptoms and hopefully mitigate them.

So I am going at this two ways.  Investigate fully my symptoms for cause and treatment.  Secondly, monitor my tumor to see if, over time, I need to take action to arrest or remove it.

Right now you don't what, if anything, is on your MRI.  You need to get it to the right radiologist or neurologist to see if they can figure it out.  I certainly wouldn't get my head cut open until I know WHY it needs to be done.  It may be that the only answer as to what is or is not on the MRI is to wait 6 mos for another MRI, and then another and another until you are 800 years old.

As for your symptoms, there are many types of vestibular disorders, including AN.  Find the right geniuses that hopefully can figure out what is going on with your symptoms and disfunction. 

Some reading:

http://vestibular.org/understanding-vestibular-disorder/types-vestibular-disorders