7 years of numbness - wondering what's going on!

[lori78]

I have not been on this site for years.  I am 7 years post-op, and still have my debulked tumor remaining and pressing on my trigeminal nerve.   I have not been able to feel the left side of my face since surgery - 7 years ago.  It's been 7 years of feeling like novacaine is wearing off on that side.  I am so tired of my nose running and not knowing it, getting food all over my face, and occasional drooling!  I am due for an MRI but I have very bad insurance and cannot afford one at this time.  In the past 7 years I have occasional episodes of 'pain' that feels like a zap of electricity in my left cheek.  Lately my mouth and tongue are driving me insane!  I have been chewing 'harder' on my left side, resulting in dental problems (my teeth are slowly being ground into my gums, I have a mouthguard now), and I continually fixate and have a spot on the left side of my tongue.  I continually play with this spot, it's a bit obsessive, and I think I play with it (bite at it) because I feel something when I do.  I cannot stop playing with it and my tongue would probably be very painful on that side right now if I could feel it!  Has anyone ever had anything similar to this situation? Do meds like Lyrica help?  THANKS.

[mandy721]

Hi Lori,
The right side of my husband's right mouth has been numb since his surgery almost 4 years ago.He describes it as feeling like he is on novocaine all of the time. He has no taste on that side.  Since the surgery, he's had significant dental issues on the AN side -  two root canals, extraction, implant, crowns, cracked teeth and a jaw infection too boot.  It's been rough.  I will try to get him to respond to your post.  If its any small comfort,you  aren't alone.

[lori78]

Thanks so much, Mandy!  Yes, it feels like novacaine wearing off all the time!  In the past year, it's felt worse.  I'm so glad to know I'm not alone!!

[mindyandy]

Lori
I had trigeminal pain almost 4 years after CK.  I had surgery because my AN was touching the trigeminal nerve.  The surgeon only removed a small piece & put teflon in (like they do for MVD decompression). My AN qas not growing so he didn't want to risk my perfect hearing by taking it out. After surgery I was numb & lost half my taste.  It was temporary. I still have some numbness on top of my ear. I can get slight tingles & numbness off & on. Its weird.

Sorry if my typing is messed up. On my phone.
Mindy

[mandy721]

Hello Lori,
This is Ken Sacharin (Miranda's husband).  I had surgery to remove my AN in 2009.  I have ALL of the outcomes that you describe.  My face is numb.  Drives me crazy!  I cannot taste or smell on one side.  My nostril on one side has SHRUNK!  My nostril on the AN side constantly drips.  I have had hyper-elevated dental difficulties since surgery.  Implants, caps, etc.  Even jaw infection.  Trouble chewing, swallowing, drooling, dripping--you name it, I've got it!  (And sadly, you do too).  Oh well.  Is there any way I can help?

Ken

[Karen]

I have had 10 years of facial numbness and I hate it.  I too have the occasional drooling, food on my face, tongue feels weird.  is your cornea numb too?  the numbness bothers me more than anything!   Are u going to the symposium this year?   I would like to talk to anyone with facial numbness if they are in LA.  please let me know if any is going so we can talk.

[mindyandy]

Karen
I had surgery last year because my AN gave me trigeminal neuralia. My story is unique.  Feel free to read my journey from past posts. I had some numbness prior to surgery & woke up from surgery numb. Not totally no feeling numb but very numb. Above ear, temple, side of nose, parts of cheek, corner of mouth, & part of tongue. Time made things better but I still get the numbness feeling from time to time. Sometimes the feeling is stronger than other times. Its strange. And yes cornea too.

Mindy

[Rob85616]

I also have facial numbness (still have feeling - but just the numb feeling), also have burnt tongue feeling and sensation of something caught in my throat when swallowing..  all on AN side.  Surgery was 1.5 yrs ago; debulked to preserve facial nerve.  My symtpoms were originally tingling and numbness to face so my Dr. thinks my symptoms are here to stsy because of the nerve damage done.  I keep hoping it could still get better.  I'm also wondering if because part of my tumor still remains (1.5 cm) if that is still bothering me cause the remaining tumor is still pushing on the nerve?  I could go onto have radiation to try and get rid of the rest, but I'm not ready for another procedure yet and it hasn't grown anymore.. so for now I just tolerate it.  It is good to know that others also still have issues (well not GOOD to know this, but you know what I mean). 

[phantagrae]

My primary symptom--what drove me to see a neurologist and eventual diagnosis--has been facial numbness.  I'm currently undergoing FSR as surgery was not an option for me (I'm a professional orchestral musician and can't risk hearing or facial nerve damage.)

Although the numbness is annoying, mine has been tolerable so far.  It's been about a year since I first started noticing the numbness.  I can still play (bassoon) and although I have to put drops in my eye as it's prone to numbness, otherwise things haven't been too bad.

I do have the scalded tongue feeling and my AN-side nostril is numb and tends to feel sore to the touch.  The roof of my mouth and my gums are slightly numb, like Novocain about to wear off.

I'm not as far down the line as the rest of you, so I don't know what the future holds.  I was told by one of the doctors I met with that it's likely that the numbness won't go away after treatment.  Since I'm having radiation, rather than surgery, after my treatments the tumor will still be in there and may or may not shrink.

Thankfully, I've gotten used to the numbness at this point.  I do hope it eases up and doesn't get worse, but I do wonder how I'll feel about it 10 years from now.