My MVD Surgery was "negative", yet still positive :)

I thought I would share my experience with my MVD surgery that I had on January 25th, 2012. I am definitely a ATN case and have been suffering since 2010. I was finally, correctly diagnose in June of 2011 by a neurologist. I started in Tegretol which helped my pain but has turned me in to an exhausted, stupid zombie. I added in Lyrica in about 4 months ago to help with some burning pain I was feeling in my jaw. I met with my neurosurgeon in before Christmas and he took a look at my MRI. He said that I am classified as a "B" case. He thought that it looked like there was a blood vessel sitting in between where my trigeminal nerve split — however it wasn't like my nerve was totally twisted around a nerve, etc which would be an "A" case and probably more of a typical TN patient. I tried to wean off of tegretol during the holiday (bad idea) and I was basically a hot mess. I then decided to move forward with surgery as it seemed like the only option I had. I'm not even 30 and I want off of these drugs desperately. I've dried acupuncture, Chinese herbs and a handful of other options.

I went in for surgery on January 25th and woke up after the 4 hrs like the happiest, drunken girl in the world. I was smiling and chit chatting with everyone. And then the Dr. came in and told me that they actually didn't find any compression. I burst in to tears and this was also the same time that I was coming down from my awesome pain meds. My Dr. was very positive however, that given my anatomy he could seem my entire trigeminal nerve and there wasn't any "smoking gun", everything was healthy looking. So what he did do was take my nerve apart, kind of like unwrapping it. He did not cut any part of my nerve or cause any permanent damage. But I guess by manipulating the nerve the way he did, that re-shocks it and it will often quit sending erratic pain signals to my face. My Dr. (as well as many of the neurologists) that I spoke with at the hospital said that the idea of a compression as the cause of TN is still a theory. It's widely viewed as the main cause but its still a theory and that it might not even be the insertion of the pillow that ends the pain, it may still be just the manipulation of the nerve that takes place. There are plenty of people that have a blood vessel compressing the nerve and they don't suffer from TN.

Anyhow, I guess this just goes to show that everyone really does have an individual case and individual answers. So it's been 4 1/2 weeks for me and I just had my post op appointment yesterday. I have had in total probably 5 days of pain, but they haven't been consecutive nor consistent nor the same level of pain as pre surgery. I'm also still on tegretol but on 1/2 the amount of lyrica I was on pre surgery. Due to the fact that I have had some pain, I was terrified to go to my post op appt and have my Dr. tell me that surgery failed. I have read the word "fail" on this website so many times that I assumed mine failed too. But my Dr. was still very happy with my progress and that just because I've had some pain doesn't mean anything failed. Basically he said that nerves take such a long time to heal, a month of recovery isn't long enough to heal. I wanted to share my story because I feel like I'm still healing and very hopeful. And that I feel like maybe "fail" is used to often. I know how frustrating this entire process is because I'm in the thick of it. When I am mentally fragile I think, if there was nothing to compress and this surgery "failed" then what is left for me? I have no other options. But truly, that is not the case. I have months still to heal and let my nerve chill out. My face still feels congested or full, and I guess that is totally normal and that full feeling could take up to a year to go away.

I'm on the road to recovery, to happiness, to being pain free. I just know it. Cheers, Jessica

The end results is that you have less pain and may be pain free in a few weeks or months time. That is what a surgery for: to relief your pain. It doesn’t matter whether there is compressed nerve or twisted nerve. Cheers , Jessica !

Thank you so much for all of the support. I've had several really good days so I say this all while I'm feeling really mentally positive, that I'm getting there. I'm 1/2 way down from the Lyrica dose I was pre-surgery and then I am just starting to go down 100mg of Tegretol today, wish me luck. Thus far today, I feel great. If I can keep this positive mental attitude up, I'll get there. XO

Jess, This is all very interesting indeed. Who says it has to be a certain way done. I think this is very positive. I agree that this will work. There is no rule of thumb with any of this yet. You may have just pioneered a cure for us. :)