I had my MVD done in 2011. I did get pain relief from the TN to a certain degree. I still have dull and sharp pain in my right temple a couple times a week. My right eye feels like it is going to pop right out of my skull most days.
The doctor says I also have Occipital Neuralgia, A-Typical facial pain, the entire right side of my face is still numb, and I have chronic muscle spasms in my neck and scalp.
I am so frustrated because I really thought after the MVD procedure I will feel better than ever!! That is not the case. So where do I go from here?
I am thinking that perhaps you have an underlying disorder that is causing this pain, such as an autoimmune disorder or something similar. I found out after my MVD that I had a very rare disorder and it was what caused all my pain, including what a-typical pain I still have (much better than before MVD)
I am waiting for approval for treatment, but the neurologist I am seeing feels that once I have a few treatments, the pain will go away. There is hope!! I would ask your doctor what he thinks is causing it and if there is any tests you should get to see.
let me know what happens
Wendy/crashgirl
Wendy, at this point my doctors say there is nothing else they can think of or do. I am very proactive when it comes to my health. Any ideas on what I can research?
My first line med is lidocaine patches on face…or cream…prescription called in.
I would consult with premier MVD surgeon…Dr. Ken Casey… He wrote the book on TN…Striking Back…also one of the longest practicing MVD doctors in the world…travels the world to teach it…consults by email and then in person if he can help.
He does many second MVDs. And gamma, and refers whatever
He thinks will help according to your past and current issues
And is honest…he doesn’t need the money…
I flew from Missouri to Michigan to have him work on me…
Email me at ■■■■■■■■■■■■■■■■■■■■ if you have any questions…if Casey did your MVD then you know this stuff already !
Even if we did have top surgeons, apparently our anatomy had different plans.... I'm good for now but probably will need another MVD someday.
I would look at 2nd opinion, different neurologist, somebody who really specializes in your type of pain. Find every study and every thing you can about your unique condition... I would be hard to bear if this stuff messed with my eyes also!
What about a top eye guy at your local university hospital?
Don't stop reaching out!
Wendy, how was your autoimmune disorder discovered? I recently had a spinal tap and it came back all clear. Bellalarke />
crashgirl said:
I am thinking that perhaps you have an underlying disorder that is causing this pain, such as an autoimmune disorder or something similar. I found out after my MVD that I had a very rare disorder and it was what caused all my pain, including what a-typical pain I still have (much better than before MVD)
I am waiting for approval for treatment, but the neurologist I am seeing feels that once I have a few treatments, the pain will go away. There is hope!! I would ask your doctor what he thinks is causing it and if there is any tests you should get to see.
let me know what happens
Wendy/crashgirl