Author Topic: I was diagnosed a few days ago with an AN  (Read 355 times)

MaxineVoice

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I was diagnosed a few days ago with an AN
« on: July 13, 2018, 03:15:10 pm »
I went for a MRI scan as I had a toothache on the left side of my face, they have advised me it is nothing to do with the AN they found during the MRI scan,  I was not told how big it was or that it was a brain tumor and was advised to watch and wait. Next appointment is in 1 year.  Not sure how I feel or what to tell people, am i right to be upset, it is a brain tumor after all, all be it small and slow growing. Confused and feel alone...
« Last Edit: July 13, 2018, 03:40:42 pm by MaxineVoice »

MarlaB

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Re: I was diagnosed a few days ago with an AN
« Reply #1 on: July 13, 2018, 04:46:33 pm »
you didn't ask for my opinion..but have you thought about getting one from a second physician experienced with ANs? Not saying the first opinion was a bad one, but just for comfort's sake. 

Best of luck to you!


Jill Marie

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Re: I was diagnosed a few days ago with an AN
« Reply #2 on: July 13, 2018, 08:08:50 pm »
Hi Maxine,

Yes, you are right to be upset!  No matter how big or small the tumor is it has changed your life and will be something you will think about often as you learn more about the tumor.  Once you learn more about the tumor and it's size you can watch and wait if that's what's best and hopefully go back to living your life normally again.  As Maria mentioned you might want to get a 2nd opinion as the doctor you saw seems to think all is good tell next year, it may well be but you obviously want to know more then you were told. 

It will take some time for your feelings about this to calm down, when they do you can tell people what you know when you want to, preferably after you learn more about the tumor. 

Mostly importantly you're not alone, glad you found this board, lots of nice people here that have been where you are and want to help you through this!  Take Care, Jill
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

ANSydney

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Re: I was diagnosed a few days ago with an AN
« Reply #3 on: July 15, 2018, 07:22:40 pm »
Maxine,

Was your toothache on the same side as your AN? ANs can cause toothache if they get large enough to press on the trigeminal nerve.

I used to get toothache on the same side as my AN. I still do when I'm dehydrated. (I remember reading that brain cells swell if the are dehydrated.)

You should find out the size of your tumor as it will let you know the options ahead and whether your toothache may be related.

For what it's worth, my tumor is about 2.5 cm wide (looking from above) and about 3.0 cm in height. I was diagnosed almost 2 years ago. I have not had active treatment. I have MRI's every 6 months and (inexpensive and convenient) hearing tests every month. The size has been stable. Hearing has declined, but I can still hear use the phone on the affected ear.

Blw

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Re: I was diagnosed a few days ago with an AN
« Reply #4 on: July 15, 2018, 07:55:22 pm »
You need a new doctor. They should have told you how big it is because that can dictate the treatment. You also need to be getting not just second opinions but lots of opinions because there will be multiple approaches for any treatment option--if surgery, what path will they take. If radiation, what type, there are three choices. Find a good ENT who can run all of the tests (you'll need to read this website to see what can be learned), and wherever you get it treated, make sure they have lots of experience--hundreds or thousands of surgeries, and if it is radiation (surgery as well), your best bet is to find centers that are set up to treat acoustic neuromas. For starters, check out Stanford, Pittsburgh, U. Virginia, and there are a number in NY. This site will have information on all of them. Once you decide surgery or radiation, go to the best place you can (insurance will determine), and if it is watch and wait, this is where a good ENT comes in who will test you every time you visit to follow hearing changes.

 


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