just diagnosed

[Joni]

Hello, I was just diagnosed with a 2mm AN.  The neurologist has ordered yet another MRI, a T3 MRI?  I'm thinking of not "waiting and watching"...I'm thinking of having him surgically remove it.  Any comments, or suggestions?

Thanks, Joni

[Kaybo]

Hi Joni~
I am sorry that you have an AN but I am glad that you found this forum. 

Remember that the most important thing to remember about what treatment choice you go with, it has to be YOUR decision and what you are at peace with.  Take your time and check out all your options and teams of doctors!

If you would like to chat with someone who's "been there," I'd be more than happy to chat with you.  You can send me a PM (on Left of screen)and I'd be more than happy to call you!

K

[leapyrtwins]

Joni -

as K said, treatment choice is a personal decision, but I'm a little curious as to why you are leaning towards surgery.  With an AN of 2 mm, radiation and watch & wait are certainly options.

I have no issues with surgery - chose it myself - but I'm wondering if you have investigated everything.

I also want to suggest what I suggest to all newbies - and even some not so newbies - contact the ANA and ask them for literature regarding ANs.  It's very helpful and will explain a lot of things to you.  Being told you have an AN can be overwhelming, but you have time to step back and think about what you want to do.  Don't jump into anything.  Take your time, do your research, and then decide on a treatment. 

Jan

 

[Jim Scott]

Hi, Joni:

I'm sorry to learn that you've been diagnosed with an Acoustic Neuroma but I think you'll find this site and the forums helpful.

AN surgery is very complicated but often very successful (I had it, too) and one should look at all their options before making a final decision on treatment.  I trust you'll be back with more questions and we'll be happy to answer whatever we can as non-physicians.  In any case, don't do anything in haste.

Jim

[Debbi]

Hi Joni-

As my friends have already said, do your research, talk to more than one doctor (and make sure they have LOTS of experience specifically with ANs), and consider all your options.  It is a big decision.  It sounds, based on the smallish size, that you have time on your side.  Don't be pressured into making any sudden decsions. 

Let us know where you are located, and perhaps someone can suggest some additional doctors to talk to.  And, of course, if you want to talk to any patients, just say the word - there are many of us who are very willing to talk and share some of our experiences with you.

All the best,

Debbi

[Nicole222]

Hi Joni,
Sorry to hear of your diagnosis.  You are in good company--we've all been there.  There are people here who have had all sizes of tumors and all types of treatments.  You'll find some very valuable info here--and tons of support as well.   Everyone here is wonderful

What kind of symptoms are you having?
Any more thought on treatment options?

Hope to hear back from you,
Nicole

[lacey7]

Hi Joni,
So very sorry to hear you have AN.  Yours is on the smaller side, so make sure you have investigated every option you have.  It' is a big surgery to go thru, as everyone else has said.
I have my surgery in 5 days. 
There are quite a few complications.....sometimes......that this surgery causes.
Do you have loss of hearing on one side?
Please consider a watch and wait of maybe just 6 months, to see if it's grown. 
And, like some people have said, get at least 2 opinions.  Read all you can on it.
Investigate, investigate, and do it some more.  Learn as much as you can.
There are alot of great people here who are willing to talk to you by phone, or email.
Take them up on it.
I don't know your age, but that can play a small part in it.
It's your decision, but ask the doctors what they would do.
Take care, and let us know what you decide, and ask any questions you want.
We are here for you.
Lacey

[Joni]

What's going on with me, is strange.  About three weeks ago, my husband and I were driving back from Texas visiting my family.  John noticed the left corner of my lip was drooping.  In the days to follow, the corner of my left eye began to droop, along with facial and neck spasms.  Two neurologists later, my current doc tells me I have blepharospasms, hemifacial spasms and cervical dystonia. Dr. Ewing orders an MRI with contrast.  Last Tuesday, he tells me the MRI shows a 2mm acoustic neuroma on the RIGHT side and is confused why I'm having left side symptoms, but a right side AN.  So, another MRI has been ordered.  He tells me it's a T3...which is a 3D MRI(?).  There is a big part of me that is wondering if I have bilateral AN's and perhaps one wasn't seen on the first MRI.

Today, I'm lightheaded, ears feels full and are ringing and I'm a bit sick to my stomach.  I guess I'm a bit confused, frustrated and concerned as to whether the doc perhaps has misread left from right on my MRI, possibly?

Joni

[leapyrtwins]

Joni -

it's certainly a possibility that a doctor could confuse left from right on your MRI - doctors are only human - but I know that on my MRI it's very clearly marked.  I didn't pick up on this myself, my doctor pointed it out to me last week when we went over my annual MRI results.

It sounds like what is going on with you is somewhat of a mystery.  Hopefully the second MRI will shed some light on the situation.  When is it scheduled for?

Jan

[Joni]

Hi Jan,  We are waiting approval from insurance to schedule it.  I'm thinking by Monday, the doc will have the approval and hopefully by week's end, I'll be in for the MRI.  What symptoms did you have?

-Joni

[cmp]

Joni--

Just wanted to echo what others have said about gathering as much info as you can--from this site, from the ANA booklet, from multiple doctors--before trying to make a decision. And please feel free to ask questions, share news, and vent when you need to!

Regarding symptoms on the "non-AN" side: The neurologist who diagnosed my regrowth in February accounted for my having mild, intermittent facial neuralgia and tooth pain on both sides of my face (despite a right-sided AN only) by saying something like the nerve signals were getting miixed up as they "crossed" from one hemisphere to another--maybe something similar is happening with you?

I do hope the second MRI clears up the mystery for you...

[leapyrtwins]

Joni -

the symptoms I had were diminished hearing in my AN ear and a feeling of fullness.  I also found out at my first appt. with the neurotologist that I had balance issues.  I wasn't aware of this until I failed the tests he gave me 

I hope your insurance company approves your 2nd MRI quickly - I'm sure you'd like to get to the bottom of all this.

Please keep us updated.

Jan

[mema]

Jan,

just curious.  What balance tests did you fail  I remember initially I thought I passed the balance test, yet I am so off balance its ridiculous.  Sometimes I can't even walk straight,  Always tripping over things.  Even just standing talking to someone I'll loose balance and vere to the side.


mema

[leapyrtwins]

Mema -

the tests were very basic.  The first one I recall was walking down a long hallway heel-to-toe - I couldn't do it without falling to one side and bumping into the wall.   The second one was closing my eyes and trying to stand on one foot - I keep falling to the side.  There were some others, but those are the two that left a big impression on me, so I remember them distinctly.  Prior to the tests, my doctor asked me if I had balance issues and I said no.  After the tests, I said I guess I do have balance issues   He agreed.

Post op my balance issues were much worse but then they got better as my body adapted.  I still notice an issue at times when I walk a long distance, especially if I'm tired or trying to walk fast. 

My doctor did give me vestibular exercises to do pre and post op and they helped a lot.  Maybe you should look into that.  I still have mine and could mail you a copy if you'd like;  just PM me and give me your address.

Jan