I had a total of 3 episodes of trigeminal nerve attack (They all lasted a few days, total of 5 - 10 attacks, a few seconds each attack. I continue to have occasional "crawlies", tingling sensations and metallic taste on my tongue - all very very mild, very infrequent and I shouldn't be complaining considering the alternative...) :
1. 1 week prior to CK (20 months ago)
2. 10 months ago
3. last week (20 months since CK)
I call this trigeminal nerve pain my "shooter" since I can feel it trasversing up my nose on my AN side to the forehead whe it happens, real excruciating like getting an electric shock!! No fun.
I have different opinions on this trigeminal nerve pain last week:
- Stanford CK neurosurgeon did not know what to think of it but since it happens infrequently, I should just monitor it for now.
- Stanford CK nurse said they have had AN patients with similar TN issues but they all eventually went away. She also added that since my tumor is dying (and slightly smaller), it could have changed form or even collapsed and may be bumping against the trigeminal nerve.
- San Diego (local) PCP doctor rendered no conclusive opinion since he is not the expert in this area. He just said try to reduce stress and if it persists, I should go back to see him.
Right now, I don't get the big "shooter" like I had last week but just occasional little ones, less frequent and less painful. Since my "shooter" started prior to CK, I think I can rule out radiation as the cause. When it came back 10 months afterwards which I guessed it could have been caused by swelling then. But now 20 months later... being an ultimate optimist, I am embracing with my CK nurse's explanation and hope for the best.
I also noticed when the 3 episodes happened, I was highly stressed out. So, I am just taking it easy now. I have type A personality. Relaxing and attitude adjustment will do me good regardless. That's what my PCP said and I like it.
When I look back at my 20-month journey since I found out about my AN, it was like a roller coaster. I am just lucky that I found Cyberknife, this forum, CK board, Stanford and all the good friends and people around me to help me through. I will continue to think positively and offer my experience to others along the way. I will be OK. And you will be too. Thank you, everyone!
Mary
BTW, Stanford will be publishing a paper on their Cyberknife AN treatment soon. They like having their patients provide them with feedback and progress. Do stay in touch with your healthcare team. They (at least mine) do care and want to help. We are not alone out there.
