Side effects from Gamma Knife used for TN

[jopmom]

I had Gamma-Knife Surgery 4 months ago for Trigeminal Neuralgia.  After the surgery, I felt no different than before.  However, recently, I began to feel a twinge in my lip like a oncoming cold sore.  Two weeks later, I have almost complete numbness on the entire left side of my face.  I am incredible greatful because my pain is gone, but I no longer feel anything.  I feel as though I can't move my face even though the PA said it's all within the nerve not the muscle.   I saw my doctor, but the PA came in first.  He said the numbness should not have gotten above my jaw and that they must have hit more nerves than they meant to.    He noticed that my eye had basically no reflex and warned me about how dangerous it was that it had gotten to my eye.  He was very concerned and stayed with me for a while.  When he left, I heard them speaking outside for a while.  The doctor came in and told me that the gamma knife does not cause numbness and if it was, I needed to use eye drops so my eye doesn't get infected. Honestly, the visit from him this time was about 3 minutes.  This was the first time I had seen him since my pain had stopped!  I just found it all odd.  He seemed like he couldn't get out of the room fast enough.  It seems to me that he would want to know more about the side effects of the gamma knife or the fact that I felt no pain, or had no feeling of anykind...I am confused...should I be concerned - take this to someone that needs to review it??  Please help!

[nancy99n]

Additional resources to get answers include the Experts or Ask a Doctor forums on this site, or sites specifically for TN like the Facial Pain Association or Living With TN websites.

[awallmy3sons]

I had gamma knife 7 months ago for trigeminal neuralgia and numbness has just started on the right side of my forehead/eyelid.  I called my neurosurgeon and they said the nerve maybe regenerating???? I'm so confused.  How are you any better?

[jopmom]

Thank you.  I went to the best place in our state to have this done, but I was so surprised at how he acted when I told him that I had no feeling.  It was like this was so new to him.  I was wondering if it IS normal to have a loss of feeling on the entire side of your face after the procedure.  I can't seem to find that answer.  

[wlewan60]

I had GKS in 2011 and was fine for a year.  Then weird sensations started on the side of my whole head. I felt nothing. Now I do feel things a bit with the exception of my one eye. This sensation I can do without.  I opted for the GNS because they said I wouldn't get any facial sagging with it as opposed to what would happen with regular surgery.  At this time in my life I wish I'd have gone under the blade. About half of the time I feel like there's something in my eye or there's something crawling up and down my face on the inside of my skin.  I wish they would have told me all of this prior to the GNS.  On the plus side I've never re-experienced the excruciating pain of the TN attacks.  Walt Casa Grande, Arizona

[nancy99n]

From what I was told when I had my Gamma Knife, it takes 4-6 months before the doctor and patient will know the results. If you are feeling confused and concerned you have every right to consult with another doctor. Write down all your questions, take a friend so you have another person to listen with you. You need to be your own advocate and to understand what these results mean.
Please let us know what you find out. Your story may help someone else.
All the best,
Nancy