Ok, My question is, How do you get up the nerve to stop taking medication after you have MVD surgery. Do those of you that have had the surgery still get those tiny "stings" above your lip and the "twinges" above your lip also. I also still have the "tingling" alongside of my nose, from time-to-time. Now I get them on the other side of my face. I have not had a bad, horrible, shock since my surgery which was over a year ago. From time-to-time if I am under a little pressure I might get a sudden intense twinge. My life as been almost completely back to normal , no living in fear anymore, but, I would like to be free of the medication. My neurosurgeon told me to stay on the medication "a very small amount" for at least 6 months to a year, following the surgery, to allow the nerve time to heal, but, now because of these feelings I am afraid to stop taking the medication. I take a very small amount of carbamazepine. Any answers would be appreciated.
Since I felt my odds were good with tn1 and highly sucessful surgeon - I went off Trileptal the day before surgery.
That medicine made my life hell for a year - took the pain and my brain away!
You have to do what is right for you. Talk to your Dr. or Pharmacist about weening off, YOU are the customer!
Thanks for your reply. I did also and my surgeon suggested staying on and weaning off the medication. Then when I send him 3 months later for a check up he said give the medication another 6 months to a year then wean off of it and now , I guess, I am just scared because of these twinges and small stings to stop it. Do you have any of the small stings are should I say "twinges"? Thanks again for your reply.
Kc Dancer Kc said:
Since I felt my odds were good with tn1 and highly sucessful surgeon - I went off Trileptal the day before surgery.
That medicine made my life hell for a year - took the pain and my brain away!
You have to do what is right for you. Talk to your Dr. or Pharmacist about weening off, YOU are the customer!
No not yet, but it's only been 2 months...... could happen in 5 months or 10 years. That's the biggest problem....NO Cure!
I did have phantom zaps here and there the first couple of weeks, like an amputee thinking their limb is still there.
My secret weapon for breakthru pain like you are experiencing was to wear Lidocaine patch on my cheek....you can also get just plain creme.
Its numbing and works for 12 hours.... not on the pain that throws you to the floor, but those medium to minor ones that just won't let up!
Your dr. can prescribe them....if not....Find Another Doctor!
In my humble opinion
Keep us posted here
Kimberly
Thanks, I will try it. Before surgery my TN pain became very intense. I think, that is why when I have those twinges I get afraid to stop the medication. I will ask my primary Dr. about the Lidocaine patches. So... tired of taking the tegretol even though I am only taking a small amount now.
I do know what you mean about NO CURE, My Aunt had surgery back in about 1987 for TN, she had the rhyzetomy procedure and it was successful until this last Christmas, her TN came back and very severe. She just turned 90 years old last year. So sad.
Kc Dancer Kc said:
No not yet, but it's only been 2 months...... could happen in 5 months or 10 years. That's the biggest problem....NO Cure!
I did have phantom zaps here and there the first couple of weeks, like an amputee thinking their limb is still there.
My secret weapon for breakthru pain like you are experiencing was to wear Lidocaine patch on my cheek....you can also get just plain creme.
Its numbing and works for 12 hours.... not on the pain that throws you to the floor, but those medium to minor ones that just won't let up!
Your dr. can prescribe them....if not....Find Another Doctor!
In my humble opinion
Keep us posted here
Kimberly