Facial Weakness 5 months Post Radiation - Typical to come back or no?

[Shan1014]

Hello everyone,

I was hoping you all could jump in and let me know how typical it is for facial weakness/paralysis to go away or stick around.  I have had a tough couple of weeks dealing with tumor swelling from radiation.  Last week facial weakness set it.  On the left side, my eye doesn't blink, there isn't any reaction from it when something gets close to it.  My face is drooping a bit and the left side of my lips aren't able to do much.  I'm sure not able to whistle, that's for sure. 

I know many of you have dealt with or are dealing with this issue.  My question is... does this typically go away? I was put back on Decadron.  If so, how long does that take usually?  Or, does it stick around once that nerve gets irritated.  I know this is a difficult question to answer.  Everyone has so many differences  and all that but I am not able to get into doctors for awhile and am just looking for some info on how probable it is that I may be stuck with this.  I would appreciate your experience.  Thank you so much.
Shan

[Chris P]

Hi Shan,

   I hear frustration in your message and I understand.  Four months after my Gamma Knife I got facial weakness and hearing loss.  I was told it was due to swelling.  I was very frustrated and concerned because the one thing I did not want was facial weakness.  After my GK I was told the facial nerve was not damaged and so I was surprised to have this problem.  After my follow up MRI my doctor told me my tumor was dying in the center and that is what it was supposed to do and that the facial weakness is due to some swelling .   He felt it would improve in time and told me to come back in June for another MRI, which would be 1 year after my GK.
   It is now 4 months after I first experienced the facial weakness and I have seen some improvement.  My tumor is on my right side and I notice my smile is some what better and I can say words I could not say too well before much better however I still can not whistle .   My right eye still does not close all the way and does not blink causing tearing .  The tearing causes my vision to be impaired so I do not drive.  I have hope that in time my face will go back to normal.  I was told by my doctor that it is a very slow process so be patient. 
   I hope this helps you in some way.  Keep us informed of your progress.  Good Luck.

Chris P.

[Shan1014]

Thank you Chris for your reply. I appreciate your experience. It helped me in waiting for my doctor appointment today.

The Doc said it is partial weakness and felt it had a very good chance in coming back.  I just need to remain on top of the tumor swelling and with any changes get on steroids again to keep it at a minimum so that it can recover.  I so hope he is right.

[Chris P]

Shan,

   Hope all goes well with you.  Keep us posted.  Patience is the key and never give up hope.

[MNTim]

Shan,

I have dealt with some type of weakness after all of my micro-surgeries (3) so radiation may differ.  In all cases I was repeatedly reminded that nerve regeneration can take up to a year. 
After my first surgery I was referred to a facial paralysis therapist.  This lady worked with me about once a month and I don't know if we accomplished anything physically but I walked out of her office every time feeling like there was hope.
I highly recommend discussing this therapy with your doctor and scheduling a consultation.

I have already scheduled something with her within a month of my third surgery and with heavy facial palsey because I know she will make me feel like a milliion bucks.

Best of luck!
Tim

[Shan1014]

Tim,
Thank you for your response.  I am going to check that out this week.
Shannon

[Susie]

Shannon,
I had GK in June 2007 with resulting facial paralysis in Sept 2007. I have had some return of movement thanks to my occupational therapist in Atlanta. She also helped me overcome severe balance issues. I am scheduled for Botox this Tuesday to hopefully help and balance my face. I definitely agree with Tim regarding the emotional benefits that my therapist provided to me. She is the reason that this statement was written: "People will forget what you did and forget what you said, but they will NEVER forget how you made them feel."