Pain after MVD?

Hey guys, I haven’t posted on here in ages… But I’m Amy, I’m now almost 25 years old. I had successful MVD surgery at Duke in January 2011 after 5 years of living with TN. The past 2 and 1/2 years have given me a new lease on life. I’ve been pain free and completely free from medicines, able to graduate college and work happily. I truly thought my nightmare was over. However, just this past week I’ve had some twinges of pain in the same area as before and it feels just like when the pain started the first time. I’m terrified, scared and in disbelief. Has anyone ever heard of this? Or have experience? I feel like I’m losing my mind over here!

Please take a deep breath. There is hope.

I'm guessing nobody told you MVD is not forever.

Who was your surgeon and do they know that your nerve endings are having a relapse?

You may just stay at the Twinges Stage....and not develop full on pain again any time soon.

I had successful MVD - 2 compressions - top surgeon -- but now has come back 5% - that is after 1.5 years. I will live with that any day compared to full blown TN.

Remission with MVD can be 0, 3 weeks, 3 months, 3 years, - the longest relief is usually 10-15 years.

Many have MVD x2.

I would do it again - even though terrified - I would not go back on those meds.

Mannnnny here have discovered Lidocaine Prescription Patches -- have your regular doc call them in for you - don't go in with a co-pay --- just have them order it to pharmacy.

Then you will have relief perhaps, and time to think about what you want to do with the progression of your disease.

I only know from reading thousands of postings here -- that it could also be that in a month - you might wake up spontaneously with no pain again for another 2.5 years.....

It is scary when it comes back - it is absolutely PTSD....

I'm glad you came back here - because people really want to help and will be honest with their stories.

There is Hope!