Do I have an AN or not?!

[TwistedSissta]

I was diagnosed with a 10mm AN on March 27 of this year, after an MRI with contrast. I am located in Idaho and have found that there really are no experts in this field here, I've been told they just don't see them that often. I sent my records to HOUSE in Los Angeles (I have family in So. Cal) and was told that it may be a facial nerve tumor due to some of the symptoms I'm having and that I should have a CT Scan of the inner ear bones. I did and the results came back normal. On Tuesday 4/22/14 I received an email from a Dr at house saying that he reviewed my MRI with one of the neuroradiologists there and that he says "there are signs of inflammation around the inner ear and facial nerve, and while it is very possible that this is a tumor, there could also be associated inflammation. There are some kinds of problems that light up on imaging like a tumor, that are inflammatory. You need some autoimmune/inflammation type blood tests, and you also may need a spinal tap to check for inflammation."

Has this happened to anyone else? Has anyone been told they have an AN only to find out they didn't? I'm really confused and frustrated. I'm afraid that while I'm trying to figure out what is going on that symptoms are getting worse and it could be irreversible. I would really just like to know what is really going on up there in my head.

[john1455]

Since few, if any, posters on this forum are neurosurgeons I doubt if anyone here can give you a valid and definitive answer. However, it would not hurt to get a second opinion (or third, or fourth). I too had a CT scan that showed nothing to be wrong and it took a MRI with contrast to revealed that I had a 19mm AN. Dr Steven Chang at Stanford Medical Center in Palo Alto, CA is a neurosurgeon who does both surgery and radiotactic stereosurgery (specifically CyberKnife) and he used to provide free reviews of MRI/CT scans. I would email him to ask if he would review your scans (send the reports too). His email address is

sdchang@stanford.edu

In the meantime, check these videos out:

http://stanfordhospital.org/clinicsmedServices/COE/cyberknife/
http://www.youtube.com/watch?v=ZbS4K9ENMAg

A 10mm tumor is classified as small so you have lots of options. Do as much research as possible starting with the anausa.org home page. They do a fantastic job explaining what ANs are and the treatment options as well as the advantages and disadvantages of each.

[jaylogs]

Hi there!! Wow, nothing like going in different directions on this thing eh?  I do know someone on here, and for the life of me I can't think of her name, was diagnosed with AN and went into surgery and everything only to find out it was a facial tumor.  So it does happen.  You might want to try to do a search on here to find this person (or if she is reading this can chime in!)  So good luck and let us know how it goes!
Jay

[v357139]

I also remember someone on here who had a facial nerve neuroma.  She is being treated by someone at House.  Try to do a search using the word facial.  I will also look to see if I can find her name.  In a way this is good, as it alerts you to the possibility of a facial neuroma, which requires different treatment than a regular AN.  I would get a few more opinions also, to be sure of which it is.  Chang does have a very good name for cyberknife.  Best of luck and keep us posted.

[Cheryl R]

I had a facial nerve tumor with surgery at Univ of Iowa in 2006.     I had started having some facial droop a few weeks prior.   This was my 2nd tumor on the rt side as I have NF2.     I had had one found on the left a couple years after my first AN on the rt.    The facial tumor was not a recurrent growth.       My nerve was severed and at the same time a piece of nerve taken from by the ear and grafted in.     It did take several months as expected for movement.     I do not have movement around the eye but the eye does close most of the way.    I look fine at rest and have an off smile.      One learns the closed mouth smile.      My recovery was  just like any AN surgery.   I did have a CSF leak 2 weeks later but they think due to having a new colloidal implant product which helps hold things inside.    3 people then had leaks including me.    So back to the previous more expensive product.   So had surgery to fix that which was much less than the tumor surgery.   No night in ICU and less surgery time.           I know my surgeon does leave some tumor on the facial nerve for some to prevent losing the nerve.                   A facial neuroma is not common so one has to have a surgeon who has experience with that also.                              Cheryl R

[leapyrtwins]

I'm with John 1455.

Sounds like you need another opinion.

Dr. Chang is an excellent choice;  I'd see what he has to say.

Good luck and keep us posted,

Jan