ANA Discussion Forum

Post-Treatment => Facial Issues => Topic started by: tatianne on November 24, 2006, 10:04:09 am

Title: tongue and lip acting up....
Post by: tatianne on November 24, 2006, 10:04:09 am
Hi everyone,
the past day or two ive noticed that my tongue feels a little numb at the tip and one spot on my lip feels almost this normal ???
I have a 8mm AN and im under wait and watch for now.
Could an AN this small cause these symptoms ??
Im afraid and feeling a bit panicked.
Thanks all
Title: Re: tongue and lip acting up....
Post by: Palace on November 24, 2006, 11:37:39 am

As the nerve gets pushed around, I'm feeling different symptoms each day.  For me at about 23mm at this point, I have all kinds of symptoms and each day I don't know what I will get.  Today, I have a numb tongue, cheek not a numb as usual, gums numb today, ear fullness actually feeling better, ear doesn't hurt as usual, hearing about gone thought, tennitis is always bad for me but, the worst today is the neck.  (killer neck pain here, today)

For you it sounds normal and possible with that size but, I'd be sure to that on the CK forum for a doctor and you will get a professional answer there.  Check that site out; it is awesome.

I wish you luck and I hope you had a nice day yesterday.  Where do you live?  My TX will be at Stanford all of next week.

Title: Re: tongue and lip acting up....
Post by: Sue on November 24, 2006, 05:27:19 pm
Hi Tatianne,

Even after GK, it's the same but it's different. Every day, it seems, different areas act up on the whim of the AN and whatever the h--- it's doing in there.  I think its doing the Macarena, in it's death throes.  At least I hope it's going through death throes. It has affected my tongue, lips, gums, taste, nose (it gets cold!) also.  Are we having fun yet????

Sue in Vancouver
Title: Re: tongue and lip acting up....
Post by: ixta on November 25, 2006, 01:30:49 am
Hi, I just had my pre op with shahinian, he informed me that the metal taste on my lips tounge, etc, tinlging nose, numb mouth is due to the AN pressing on the Trangeminal nerve, not the facial.
Trangeminal nerve is all sensation, feeling etc.

Facial is all motor.

So it is pressing on the Trangeminal.

I have the same symptoms. Mine is coming out this Monday.

visit a patient page



see my posts under surgical ..
Title: Re: tongue and lip acting up....
Post by: tatianne on November 27, 2006, 11:28:33 am
thanks guys, I appreciate your taking time to respond.

My tongue and lips are actually doing better, it seems to come in little episodes...come and go type of thing but from what ive been reading that seems to be the pattern with almost everyone who has these symptoms.
Yesterday the good ear felt blocked off and on for most of the day, I was freaking out a little...but i was dusting a lot and I was congested from allergies, when my congestion cleared the ear felt better.
I pay so much attention to my ears and head symptoms that so times i think i make them worse or they are more present because Im worried.
In one way I hope this little disturber never grows, in another way I just want to have my GK and get the treatment over with so I can move forward and put this behind me.....can you actually ever put this behind you ?
Next MRI is in January....I guess i will wait until then.
Title: Re: tongue and lip acting up....
Post by: Dealy on November 27, 2006, 11:48:55 am
My entire right side of my face-part of my tongue went numb on January 25th of 2005. I will remember that date as my D-Day. That is when I found out I had another AN. After radiation it got worse. Even affected my swallowing for awhile. It has been almost 5 months out since FSR and I am feeling the affects of something going on in that head of mine. Started on Steroids again on Friday. Not so much for the numbness of the face-that never changes- but my ear canal inside is swelling. When I move my jaw my ear canal closes and shuts off my hearing. Its like you get one down and along comes another challenge. On top of that we have a cold front coming through the last few days. That barometric pressure also seems to fire up those nerves. I have been on Steroids so many time (a six pack) at a time for 6 days I feel like the Steroid Cafe. My wife has a AUnt who had CK for a Benign Tumor of the Menniges of the Brain this summer. They still have her on a low dose of Steroids. She says by the end of the day her feet feel just wierd and her legs feel like rubber. My wife called Johns Hopkins an talked to an on duty onconlogist and he told her to get me off Steroids. Figure that one out-always was told you cannot just stop like that. Anyway-know what a numb face feels like.
Title: Re: tongue and lip acting up....
Post by: tatianne on November 27, 2006, 12:02:16 pm
seems like you have lived through a lot over the past years.
Its difficult to not get discouraged when we are faced with one trial after another but
Im going to have faith that for you, myself and all the others on this board that one day this will be
able to move forward and leave this AN thing as a part of what happens to us during a few years in our life.
Thanks for answering, its very helpful for me to know that im not alone and others in this boat are experiencing a lot of what I am. I feel less afraid and not so alone.
Title: Re: tongue and lip acting up....
Post by: targa72e on November 27, 2006, 08:41:20 pm
I had numbness in the tip of my tongue start about 5 months ago, I am also a wait and watcher. My AN is smaller than yours. Its just like realestate location,location, location.