I am almost two years post-MVD (July 2011) & am almost back at the full severity of my deep inner ear pain (Geniculate Neuralgia/Nervous Intermedius Neuralgia) that I had prior to surgery. I was told that MVD doesn't work as well for people with GN/NIN - - I also feel like the pain is now spreading down the right side of my face, into my jaw, and behind my right ear (I was told by two doctors that is a sign of Occipital Neuralgia).
I also developed chronic, severe migraines about 2 months post-MVD.
Does anyone else have similar stories/experiences?
I just saw this, so sorry to read of your TN returning and worsening.
Unfortunately I’ve read of many people who’s TN has returned after months or years. It’s not abnormal. MVD isn’t a cure as most people may believe. It is an opportunity to try and relieve pain for as long as possible. Until we know what causes TN we won’t have a cure. There are so many variables involved with TN, although we all share similarities, there are no two cases alike. I had my MVD April 9th, and so far so good. My TN became resistant to meds, I have bilateral TN and remain on 1200mg Tegretol . My right side was controlled by meds my left caused me 24/7 pain for 8 months, since MVD no pain, BUT I can’t even wean 1/2 a pill further…I did get off 2 of my 3 meds though.
Have you discussed your situation with your neurosurgeon? Any recommendations from him/her?
Some people elect to have a second MVD, others have tried alternative treatments…
I hope you are finding relief from your pain in the meantime.
Thinking of you, (( hugs )) Mimi
I do not have anything similar, but I am curious about something you said. You said your doctor said MVD doesn't work well for people with GN? I am going in for MVD for GN on Tuesday. My doctor did say that they had never done Gamma Knife on anyone with GN and could not find any studies to support it, so I'm curious what's supposed to be the best option for us.
I am so sorry for your pain. I understand how wretched it is, and can only imagine your frustration at having more pain now. My thoughts are with you.