I am writing to you all in a bit of desperation. I had my MVD on 6-18-13. On day three post-op, the TN pain started to come back, slowly at first, but the floods gates opened and now I am back at square 1 (at least it feels like that). My NS immediately started me on Neurontin (cannot take Tegretol as my red blood cells get too low). I cannot say it has done much other than make me dizzy and nauseated (or is that post-op stuff?). Anyway, NS says that inflammation is at its worst 24-48 hours post-op, which may coincide with the return of my pain. He feels that with time and healing, my pain may resolve.
I do not have an appnt with the NS until 7-1-13. I tried to wait until then to get answers to "perpetuate hope" that I did not go through with the surgery for nothing. But, I cannot wait and want to know if anyone has experienced this or knows any information about this? Please, just be honest and tell me if this is the best it will get.
Oh Hon, we are like snowflakes here - we are all sooooo very different.
I had pain come back at week 11, had started living life - wheeee - then SLAM
PTSD
A few weeks on meds - and usage of lidocaine face patches got me thru and 8 weeks later - I had a year of pain free.
Now 6 months after that 5% pain 2x per week.
Everything is swollen in your head - there is no reason to think it didn't work just yet. Try lidocaine to keep your med dosage down - and then you can really chart your pain without feeling druggy.
Post often, and don't worry about how we all did --- if there are 200 MVDs here -- 185 of them were different at different stages.
And if you think about it - those who wake up pain free - well, they don't hang around here, so you get a bias of more people in pain who need to come here.
Ten days is not a good time to be judging anything -- please keep surgeon aware - and do nothing but rest and stay comfortable -- STRESS = worse pain!
You have not even begun to heal yet. Your body is in shock and you have lots of swelling. Give it a couple of months. You have been though a BIG surgery.
Agree with the others!
I will also add, you may want to think about a SLOWER reduction in meds as a result of your current pain levels.
I was on a heavy duty reduction by my NS from day 4 post op by week 3 I had eliminated two meds and got from 1600mg Tegretol to 800mg I started having the shocks and horrid pain, couldn’t talk etc. I added back 400mg so that I’m on 1200mg Tegretol and NO TN pain to date.
I should mention that I have bilateral TN and my right side was always managed at 800mg Tegretol… My left is my mvd side, and this coming week I will try again to wean down a bit, but this time my Neuro says by half a pill.
My goal is 800mg for right side.
My left was med resistant prior to mvd.
Give yourself time, it took your nerve awhile to get damaged, it will take time to heal.
Try not to stress, I know it’s hard… Positive thoughts!
Mimi xx
Oh Hon, we are like snowflakes here - we are all sooooo very different.
I had pain come back at week 11, had started living life - wheeee - then SLAM
PTSD
A few weeks on meds - and usage of lidocaine face patches got me thru and 8 weeks later - I had a year of pain free.
Now 6 months after that 5% pain 2x per week.
Everything is swollen in your head - there is no reason to think it didn't work just yet. Try lidocaine to keep your med dosage down - and then you can really chart your pain without feeling druggy.
Post often, and don't worry about how we all did --- if there are 200 MVDs here -- 185 of them were different at different stages.
And if you think about it - those who wake up pain free - well, they don't hang around here, so you get a bias of more people in pain who need to come here.
Ten days is not a good time to be judging anything -- please keep surgeon aware - and do nothing but rest and stay comfortable -- STRESS = worse pain!