Just thought I would post and update of my recovery and progress after my MVD surgery in May of this year. Unfortunately I fell within the 5 to 10 % that it doesnt work for. Prior to the surgery I had Atypical Trigeminal Neuralgia. I was very fortunate and blessed not to have all of the facial nerve pain and shocks that go along with the Typical. I mainly had a constant jaw and tooth pain on my left side that was unrelenting. After the MVD my surgeon informed my family that my inflamation was soooo bad that it would realistically take about 8 months before I would get any real relief. He told me that my inflamation is the worse that he had ever seen. Recovery from the surgery itself sucked for me. But everyone is different. Thank God for my mother she took care of me for a couple weeks until the pain was under control and I could start eating and keeping anything down again. Dont know what I would have done without her.
I had a few times that I had brief rays of hope. a few days or maybe a week that I felt better of course that could have been from the numbness left over from the surgery. I still have numbness in my forehead on the left side after all this time. Unfortunately my pain isnt better and it actually continues to get worse and wors as the days go by. I have given up hope on my MVD surgery at this point. What started out as Atypical for me is now more Typical, I am getting the electric shocks in my forehead and even the top of my head on that side. I get shooting pains into my eye and it lasts forever. For some reason when my forehead starts it will last hours just constant shocks. Of course I still have the jaw and tooth pain I started with. The pain just keeps seems to grow and move where it never was before.
I am going to pain management and I have been on Fentanyl patches since last year but I am now up to 100 mcg a day and I change them every 48 hours instead of the normal 36. I take Oxycodone for the breakthrough pain. I am getting a pain pump installed and my pump trial is set for December 21. Cant wait to get the process started I am hoping it will give me total pain relief, if not atleast give me my life back. I havent driven since Dec 09 because of the side effects from the tegretol and the fentanyl and it sucks losing my indepence. Now I can only go somewhere when someone is free and has time to take me. Just something as simple as a Drs. appointment is a pain. My pump has a remote so that during the day if I need additonal pain medication I can push the button and get extra. I have no idea what to expect yet. The doctor and I only briefly discussed it months ago and the nurse showed us the pump itself. At the time I wasn’t ready to take that step and have another surgery but the pain finally made the decision for me. I am trying to get information on the pump in the mean time.
Sorry if my story seems to be a downer but I want to geive an honest update. I fall within the select few that the surgery doesnt work for but I hope and pray for the rest of you considering your outcome will be better. Best of luck to you all and may god bless you and yours.
I am so grateful for my family, despite everything they have been so supportive. It is almost as hard on my husband as it is on me. Yes I endure the pain but it is so difficult for him to see me in pain. Depressing for both of us. Just a reminder of how important family is to me and to all of us when we go through things like this.
I’m very sorry it didn’t work out, my best to you. Love, Mark
So sorry it did not work, mine did not either. Was very poorly after the operation. I get desperate at times too. hope you find a answer. Love Margaret
Wow I hate to hear that Margaret. What are you doing now for pain? How long ago was your surgery? I will post once I get my pain pump installed. I was scheduled for Jan 20th to start the pump trial but they had a cancellation so I am now getting started Dec 21. Merry Christmas to me 
Had my MVD in June 2007 Pain free for 2 years, then the pain returned only this time instead of being through my eye it is a constant ache in my cheek bone with shocks going into my ear which I lost my hearing in when I had my MVD, then through into my head at times. At the moment I am taking 900mg of Gabapentin 3 times a day. But the pain manages to come through I have liquid morphine for when it get unbearable. I am due to see a new consultant on the 20th December. Hope you have luck with the pump trial I am very interested to see how it goes Love Margaret