25 yrs out, return of tongue numbness on right side

[elsie]

i had my surgery 25 years ago, tumor the size of an orange.  got it all, 10 year followup confirmed no tumor.  for the last several days, have had numbness in my tongue on the tumor side...one of my symptoms when it was discovered.  also have some right sided facial numbness that occurs sporadically over the years, feeling now. i lost hearing in my right ear with the tumor, so that doesn't help me figure out what is going on.  my face and right eye never fully,(but almost) recovered, no change in them right now.  only other symptom was a feeling like i was in one of those cartoons when the character comes to a sudden stop, but is shown bouncing quickly back and forth.  thankfully don't have that now.  my question, how long do i wait before checking this out, if that is even necessary?

[Kathleen_Mc]

Elsie: I would think you should be having this checked out sooner than later.
Kathleen

[elsie]

Thanks, my gut really knows that.  Have made an appointment with Dr. Wiet.  I had hoped that by now my tongue would be back to normal, but it's not. Really, really hope that I can cancel the appointment because the numbness goes away......I don't want to go thru this again.

[mindyandy]

Elsie
Keep us posted on what your doctor says. I sure hope its nothing to be concerned about.

[elsie]

My beast is back.  I got the call today.  Before christmas,  Dr. Wiet initially told me I was clear, but the MRI showed something in the canal and that he wanted to see the mri himself - i knew at that point what the call today would be. i thought i was prepared for the news, but i found it harder to take than my initial diagnosis 25 years ago. 

 It's 9mm, far smaller than my orange sized original an.  Dr. wiet just had back surgery today...all went well according to his son, so i won't see him until feb 4.

i don't know what my options are yet, but i do want it out.  my tongue is getting worse and the right side of my face has a continuos tingle.  the thought of the little bugger maybe doing further nerve damage is not comforting.

i'm glad i found this forum.  i know more now than last time, which believe me, is very scary, but being able to share is a real comfort.

[TexasSprinter]

elsie--I'm so sorry to hear about the return of your AN.  I have gone through two AN surgeries, one year apart (Dec. 2012 and Dec. 2013), and one positive thing to consider is that the recovery after my second surgery is easier in most respects than the recovery after my first.  I didn't have to deal with the same balance/vertigo issues because the balance nerve was sacrificed during the first surgery and my body has completely adjusted this past year.  I have also had one year to adjust to single-sided deafness.  It was also somewhat more comforting "knowing the drill" as far as preparation for surgery and what to expect.  One other positive thing to consider is that technology has improved a lot over 25 years and hopefully this time your treatment (if you need any treatment) will be a breeze.  Sorry again but stay positive!
Scott

[elsie]

Thanks, Scott.  I don't think no treatment is an option for me (psychologically).  I couldn't stand the not knowing and the fear of further damage to my facial nerve.  My facial tingling and numb tongue have gotten worse, and i don't want to live with that if i don't have to.

good to hear that surgery was better the second time.  i will be listening to all the options and likely talking to at least one other doctor.  glad i live in chicago and have good choices.

[Kathleen_Mc]

Elsie:
I am so sorry you are having to go through this
 I fully understand the idea of "no treatment" not being an option for you psychologically.
When my regrowth was found it was also tiny (I however didn't have any symptoms of it like you do), my son was only two months old and I wanted another child so I went into "watch and wait" mode for several years before I could no longer take it and had the sucker out, I was offered gamma knife at that point but I didn't want to chance it wouldn't be effective (I've Irish luck which is no luck at all if it wasn't for bad luck) and then be more difficult to remove and frankly....
 I just couldn't stand it psychologically knowing it was in there, and growing, and had almost killed me the first time.

Scott is right it's not as bad the second time around but I guess that would depend on your losses from the surgery. For me the first time around I lost everything there was to loose (hearing, facial, balance) so the second time around it was just recovering from the surgery itself

keep us posted
Kathleen