Awaiting diagnosis, terrified

[yellowpixie]

Hi everyone,

I feel a bit of a fraud posting this. I had an MRI (without contrast) 3 weeks ago as part of a TMJ problem on my left side. When the maxfax team received my results they rang me and said I needed an urgent MRI with contrast 2 days later as they had seen a 10mm x 8mm 'something' which they think could be an AN. I went for the MRI but they couldn't do it with contrast as they think i'm allergic, so they spoke to the radiographer who ordered a different scan, I presume from a different angle. That was last Thursday. I was told it was marked urgent but I've still not heard anything. I rang this morning and they said that the report hasn't happened yet as whomever it was sent out to has sent back a query on the images. I have no idea what that means and i'm a real mess. I'm 41 and as far as I know have no symptoms (which they were surprised about as the TMJ issue is on the left and this finding is on the right). I do occasionally have some tinnitus (which I am noticing more now, esp after crying) but I have always attributed that to chronic migraine and stress. I guess what I'm asking is how to prepare myself with questions should this be concluded to be an AN please. Also, what happens with diagnosis if I really can't have contrast? I wish I understood why they had come back with a query on the image. I know the radiographer that did the scan checked them before I left as they said they didn't need to do more. I also took myself for a hearing test on Monday and apparently I have above average hearing. Google is terrifying on this topic so any and all real advice would be welcomed please. Anyway, thank you for reading.

[MarlaB]

Been there. No fraud judgments!!

First suggestion.

Breathe. You are not alone here. I remember that fear of the unknowing, then the knowing, then the internet searching (and that was BEFORE AI's horror stories.)

We are all survivors here and will be here through your journey.

That being said, the fact that you haven't gotten a call yet might be an indication that they still don't know definitively what it is, and there are all kinds of new technologies to determine size and location, if that's what it is.

Wishing you the very best. Keep us posted and keep asking questions.

Marla
Admin Team

[yellowpixie]

Thank you Marla for taking the time to reply, appreciated. I think its harder knowing the dept is now closed until Monday. Last weekend was hard not knowing but this one feels harder. May I ask a question please... is this a dangerous diagnosis? I'm trying not to wade through the reems and reems of scary stories on the web. Is there a positive to all the negatives?

[MarlaB]

WELL...a "dangerous" diagnosis?

I'm still here!!!

All is good, yes, there are scary stories, I suggest staying away from those if possible, and there are MANY MANY positives, not least of which are the amazing, incredible, supportive people here on this forum, at the ANA, and out in the world. I live in a relatively small town, and there are half a dozen of us who have moved here from other places. All of us have had different experiences, different treatments, different outcomes, and all of us are still happy to be connected.

I learned a lot about myself in this process, who my friends are, who I can count on, and what I want to focus my attention on giving back. (one of the reasons I'm on this forum is because of all the support I received here.)

IF you get a positive diagnosis, keep asking questions.

IF you get a negative, keep asking questions.

See where I'm going here??

M

[yellowpixie]

I think what I meant was, is it really this scary

[MarlaB]

"is it really this scary?"

Um, in a word, yeah.

but

You are not alone, and we've all been there and TOTALLY understand.

It's ok to be scared, if you find yourself needing help and support and you can't find it here or in a friend group, there are videos on the ANA library that might offer you suggestions to help you deal with your fears:

https://anausa.org/learn-about-acoustic-neuroma/video-library

[DanFouratt]

Hello,

Yes it is scary and I was scared for a long time until I found this group. I met with a wonderful young lady (I am old) who told me it will be okay and I believed her. And I have a friend who went through this. Do not worry about it until you know what you are dealing with.  I will tell you a short story.  Many years ago my son needed a biopsy.  My wife was using the internet and working herself up in to a frenzy with all the potential.  I finally pulled the internet so she could no search any more. Two weeks later we found out he had cancer but there was nothing we could do in those two weeks so I thought relaxing was best. We took action after we knew what we were dealing with.

Advice: Enjoy the weekend.  You can make no plans until at the earliest Monday. Also understand I believe the scary stories get more press then the good stories.

When you find out and you have an AN you have time.  These are slow growing.  Let us know the outcome.  There is great support in this group. 

Good luck on your journey,
Dan

[Mark F.]

Marla,
I know this is scary.  If it is an AN, and the size is 10x8 with no symptoms just know that the first course of action is always going to to be wait and re-test in a few months to see if it is growing.   One of the unfortunate things about AN treatment is that for most people there is a very long wait before any action is taken, because there is a chance that no action will ever need to be.  If you end up diagnosed with an AN tumor, sometimes they just stop growing.  You are in the worst stage for anxiety right now, the not knowing, and the fear that you get because the Doctors have to tell you worst case scenario.   As for not getting a call, I can relate to that, When I had my very first MRI it was my ENT that ordered it because I had suddenly lost most of the hearing in my left ear.  He said the MRI was to rule out a tumor and not to worry because more than 90 percent of the time they come back clear.  Anyway after 3 days of not hearing back from him one of my friends asked if I ever signed up for MyChart.  I said no, and he said your results might be on there if you sign up.  I made the mistake of signing up on a Saturday, and when I checked test results sure enough it was there.  And it said mass consistent with AN brain tumor.  I had to wait till Monday to call my ENT and see what was up.   When I called on Monday, he seemed  very reluctant to say anything until I blurted out look I already know it's a tumor, I just want to know what we are going to do about it.  Then he scheduled me for a sit down to go over options.   Do you have a MyChart account to check on your medical information?  It has been good for me because I know what's going on with my test results within a day. 

Mark.

[Mark F.]

Oh and by the way, you are lucky you found this group so early in your journey.  It was a couple year for me of not really having the support of people who have been there before.   Google can be terrifying as it only seems to mention really bad cases, or famous people like Mark Rufalo

[ESH]

Hi! As Marla suggested, breathe. There is no emergency here even though everything feels scary. If it is an AN, you will have time to think and decide what you need to do. I had two months from a hearing test that showed single-sided hearing loss to the MRI and diagnosis. It was then another month until I met with the doctor who now monitors my AN. Mine is bigger than what they see on your tests. (And I understand the allergy thing causing a hassle as i have that problem with CTs (iodine-based contrast) but not MRIs--which does not matter here but does in some circumstances.) My doctor recommended watch and wait in February of 2025. I consulted another doctor at a different program who agreed. I now have done nothing other than monitor for more than a year as the AN has not changed much.

I currently have only a very little usable hearing in my bad ear, minor balance issues, and I'm living a good life.

You can do this.