Just diagonised and question

[zhengcw]

Hi, everybody,
Two days ago, I was diagonised as right AN with (21X16X16), I feel numbness on the RT face. But strangely, I also feel numbness on my RT side of mouth and tongue, which I did not see on the other people with AN, is it  normal symptom of AN?
With this size, what should I do? surgery or GK?
Appreciate for information and suggestion.

Chiwen

[epc1970]

Chiwen
My guess is  that your trigeminal nerve is involved-the trigeminal nerve controls sensation to your face and the facial nerve controls facial function-which is not unheard of. The trigeminal nerve also controls the sensation in you mouth.  Given the size of your tumor, you should have both surgery and radiation options open to you  but that is also dependent on the location so your Dr will be the best person to talk to about the treatment options that will be best for you.
Erin

[CHD63]

Hi Chiwen .....

Erin gave you good advice.  Just want to welcome you to this forum.  We are here to assist and support in any way we can.

If you have not already done so, you should send for the ANAUSA materials.  They are excellent ..... very informative and reassuring.

Ask any more specific questions you may have and forum members will be sure to post of their experiences.

Let us know how you are doing and what your medical professionals are telling you.  This is one case where you want a doctor with much experience treating acoustic neuromas.

Best thoughts.  Clarice

[sues1953]

Hi

My only symptom was tongue numbness which I found was not real common on THIS forum anyway.  After the MRI I was told that I have a 3.2 cm AN.  I had a second opinion last week and was told that it is very possible that I have a Meningioma which does not grow on the hearing nerve.  There were two things that made the second Dr. think it may not be an acoustic neruoma  1) no hearing loss  2) the shape of the tumor.  I am having a third opinion and another MRI to get a better idea.  From what Dr. #2 said there may be a chance to save my hearing if its a Meningioma.

What size is your tumor?  Do you have any hearing loss?

Welcome to this forum.  You will learn a lot.  Good Luck and keep us posted.

Sue in Michigan

[leapyrtwins]

Chiwen -

I'm assuming you're giving us the size of your AN in millimeters, which means it's about 2.1 cms

Radiation is usually an option for those with ANs of less than 3 cms, so it should be an option for you.  Surgery is also an option.  Treatment choice - if you have it - is a very personal choice and you should decide what you think is best for you; after educating yourself, of course.

As Clarice suggested, you should contact the ANA for their informational literature; you'll find it very helpful.

Although there are various symptoms associated with acoustic neuromas, not all of us had (or have) them.  Prior to my diagnosis my symptoms were a feeling of fullness in my left ear and diminished hearing.  I also had balance problems that I was not aware of; my doc discovered them.

Facial and tongue numbness are definitely symptoms that AN patients encounter.

Jan

[zhengcw]

Thank all of you.

leapyrtwins, you are right - my size is 21mm x 16mm x 16mm, is thata typical AN? . What I can recall is almost 1 year ago I started  to lose hearing,  then half year ago (October, 2009) I felt abnormal in my mouth and tongue, final in January of 2010  I felt numbness on my left face before I saw my family doctor. At that time CT result showed clear, and recently MRI showed as "Mostly Accoustic neuroma" and "leastly  Meningioma" - but I am afraid that the technicial who wrote the MRI report was based on doctor's description of numbness which didn't include tongue numbness (I don't know why he didn't say it when requesting MRI), should I need another MRI?
Thanks,

Chiwen

[Mei Mei]

Dear Chi Wen,
Jan just summarized your options very well.  You can choose surgery or GK.  It's a very personal choice.  I myself thought about both and went for the surgery.  I had facial and balance symptoms but no tongue symptoms. 

Sincerely,
Mei Mei

[epc1970]

Chiwen
The MRI tech report includes both the possibility of a menigioma and AN because they can present similar symptoms and can look somewhat similar on an MRI. My initial diagnosis report left the same conclusion. The only way to tell 100% sure is for a neurosurgeon to take a sample and have it biopsied. Surgeons usually look at the scans themselves rather than the report in order to determine what type of tumor and what type of treatment is appropriate for you so another MRI would not be necessary unless your treating physician needed different images to structure your treatment by.   
Erin

[zhengcw]

Thank you everyone!

Chiwen

[Debbi]

Chiwen-  I don't have much to add to everyone else's good comments other than to say that I did not have any tongue numbness before I was treated, but that side of my tongue has been numb since i had surgery nearly two years ago.  Your best course is to consult with several treatment specialist so that you can understand what all your options are.  Wishing you much luck! 

Debbi

[ksiwek]

Chiwen,

I was just diagnosed a week and a half ago.  I just started feeling ever so slight numbness in on the left side of my tongue and face.  I also have quite a bit of hearing loss in my left ear.  The hearing loss is what lead me to the ENT and when I felt this slight tingling I requested an MRI.  Glad I did.  Sometimes, you have to be your own advocate.  I know now that I do have some balance issues, but didn't realize it until the doc pointed it out.  Now I feel more paranoid about what is real vs what I am 'imagining'.....

Best of luck deciding what to do...surgery is my only option due to tumor size...ugh!

Kris

[ombrerose4]

Hi,
My only symptom when I was diagnosed was a burning, numbing feeling on the left side of my tongue. After I had my MRI and saw my neurosurgeon he was very surprised that I did not have any hearing loss on that side. He said that most people would have lost at least 90% of their hearing due to the size and location of my AN.He considered that it may be a meningioma, but didn't really think so. And he was right. You will find a very wide range of symptoms on this forum. Size and location
are the two biggest factors in symptoms, but then there are many of us who don't fit the mold. Good luck!

[sues1953]

Hi

I'm so glad I checked this thread again. 

Erin, Thanks for your input on the difference between AN and Meningioma.  The Dr. I saw last week did tell me the only way to know for sure is a biopsy of the tumor. 

I was lead to believe that because of the manner in which my symptoms presented lead him to believe it may be a Meningioma.  My MRI is not allot of help because of the thick slices and a MRI of the 8th cranial nerve would be most helpful in knowing whether or not to try and save the hearing with a different approach.  I am in the process of trying to get another MRI.

I didn't realize that tongue numbness was a common symptom 

Sue in Michigan

[leapyrtwins]

I didn't realize that tongue numbness was a common symptom 

There many common symptoms of an Acoustic Neuroma - but not all of us experience all of them.

Our AN Journeys are all somewhat unique.

Jan