2 yrs post surg.. still no feeling

[lori78]

Hi, I'm two years post two translab surgeries and one gamme knife.  I lost hearing in my left ear, but since my 2nd translab, I still, after more than 2 years have no sensation on the left side of my face!  My tumor was large and had my brain stem in the shape of a "C".  They removed about 90% and GK-ed the rest.  I've shown no growth or necrosis from Gamma Knife.  My doctor also thinks the remaining tumor is pressing on the nerve that is causing this decreased sensation.  My numbness is completely symmetrical to my left side, where the tumor is.  It's to the point that I feel like I could bit off my tongue and not feel it, and at times I do bite it accidentally.  If anyone could shed some light on this, I'd really appreciate it.  Thanks,

Lori

[jazzfunkanne]

hi, i am over 2 years post op for a 4.5cm AN, i still dont have feeling on the right side of my tongue or the right side of my face, am not sure of the reason am sure someone will shed some light on it.

[Jeanlea]

I am over 3 1/2years post-op and still have numbness on my tumor side.  I figure it is because the nerves were severly squashed during surgery.  They are very close the facial nerves that were also squashed causing my facial paralysis.  I can feel strong pushes on my face, but there's no way that  could feel a slight touch.  If I'm not careful about using a napkin I end up wearing my food because I can't feel it.  No taste on that side.  No real smelling abilities on that side either.  My tongue always feels "thick".  It's been so long now that I no longer remember what it felt like to be able to feel something other than the mask-like feeling on that side.

Jean

[MAlegant]

Let me chime in.  I'm only 8 months out, but I have plenty of numbness (and weird sensations, and also pain) on my tumor side.  This is because my trigeminal nerve was really traumatized by the tumor.  My tongue also feels thick, I bite my lip, and the inside of my mouth without knowing it (today I looked like I had collagen injections on my right upper lip!) I am hoping for recovery, but I will deal with it if it stays like this.  I'm hoping I'll get used to it and find good drugs to deal with the bad days. 
Marci

[lori78]

Wow, Jeanlea, I am EXACTLY in your boat, and same to you Marci!  I have no feeling on the left side of my tongue, face, and my smell is affected too.  I have noticed it coming back extremely slowly, like at first I couldn't feel the entire left side of my head, and now I can feel  some of the back of my head. Also my eye didn't produce tears for about a year, and do now, although I have dryness issues.  I also bite my lip and tongue and it's become a bad habit.  Sometimes I slur, and other times I get these sharp sensations in my cheek area that feel like lightning struck.  I have a little more feeling now in my chin area, so I think it's coming back very very slowly.  Thanks for writing everyone, it's good to know other people are in the same boat as I am! 

[Brendalu]

I was hoping that someone would have an answer for this question.  I am at close to year four and my right side is numb.  Docs claim no nerves were severed, but I can't find a reason why.  It is so much fun to run into something be all battered and bruised and not realize it until I see myself in the mirror or someone asks me what happened!
If anyone figures this one out and how long we will be numb I would really appreciate an answer.

Brenda

[moe]

Curious topic.
The brain and all those cranial nerves are so intricate. Lots of varied symptoms.
I had my facial nerve completely cut to get the tumor. Still working on getting the left side of the face working.
But I have not noticed change in taste (except for an occasional bitter taste in back of tongue).
No numbness, except around left ear from second surgery.
So that's one good thing about getting my facial nerve cut!
Maureen

[wcrimi]

What do all your surgeons say about the the potental for improved feeling over time?

[MAlegant]

The doctors seem to agree that a year will tell the tale but there are many here that are getting improvements even after a year so I haven't lost hope.  I was wondering if any of you that also experience this have sensation that returns but then goes away again.  That's what is happening to me now.  I get weird tingly feelings in the very numb areas and can feel a light touch, but then a day or so later, it's numb again.  Nerve hide-and-go-seek!

[jerseygirl]

Hide and seek is a great description! It can be applied to everything: balance hide and seek, dizziness hide and seek, etc. I suppose mine does, too. The numbness and burning sensation varies from day to day but it is receding over time. I can't wait for them to go away completely! Marci, congrats on your progress! Lori, I don't believe for a second that you are beyond hope.  Keep doing massage and alternating hot/cold compresses to your face. This should help over time. Hang in there!

           Eve

[Meagan]

Good morning....I had in my face yesterday the feeling of going to the dentist and then it wearing off.....but then feeling went to its usual numbness....I was told it is the nerves firing up and that is a super good sign.  I see my face retrainer and she gets very excited when i have the surges.  So hang in there as this is the slowest possible thing ever.  I am 2 years and 4 months post op.

Good luck all.

Meagan

[wcrimi]

Excellent news Meagan.

Whenever I hear that people are still showing signs of improvement a year or more after surgery, it encourages me because I hope I will continue to improve also.  I don't have it too bad. It's mostly just chronic dizziness and balance issues when I'm in motion, but I still want to improve.

[MAlegant]

Ditto.  Every time I hear that someone is still improving (whatever the issue) it really does give me hope.  Thanks for posting that.
Marci

[Meagan]

Just last night I had a cry because you know we all need to....and I had a bag under my bad side that was twitching....and i am 2 1/2 years post op so it will happen....some are just slower like me....  Maybe one day i will feel the drool down my chin or food particals

[ppearl214]

What do all your surgeons say about the the potental for improved feeling over time?

this was the question I was going to ask... what are your team of drs saying? As we know, nerves are slow for regeneration/healing... and as we learn here, "individual results may vary".  I am thrilled to hear of those that start and feel the signs of progress  but am curious to what the dr's are saying.   

I'm sorry I cannot contribute here with answers, but I'd like to know as well. The ANA Symposium is also having mutiple workshops for facial issues (workshop descriptions below). I can try to find out there, as well, when I attend.

Facial Reanimation Techniques (Acute Phase)
Acute facial paralysis is devastating to any patient. There is hope towards partial or complete re-innervation of the nerve and this comes with a basic understanding of electrophysiology of facial nerve re-innervation which can be studied electrically. What to do in early facial paralysis and how physicians study and predict re-innervation will be reviewed.

Facial Reanimation Techniques - Non-surgical Techniques (Chronic Phase)
Various techniques have been developed to assist patients in obtaining full facial symmetry and function after facial nerve damage. In the chronic phase, non-surgical facial neuromuscular retraining techniques can be used to improve symmetry and decrease abnormal movement patterns that may occur during nerve regeneration. Patient selection, timing and details of techniques will be discussed.

Facial Reanimation Techniques - Surgical (Chronic Phase)
For patients who have partial or long-standing permanent paralysis of the face, options do exist. They include dynamic techniques such as facial hypoglossal anastomosis, and more static procedures such as regional muscle transposition, surgical eyelid repair and neurovascular regional muscle transfers. Patient selection, surgery timing and details of technique will be presented.


Phyl