Hi all. I am over a year post MVD and the pain has only gotten worse. The TN pain in my face was a mix of type I and II and now I have type II pain 100% of my day. The only meds that work are narcotics, and sometimes those don't do the trick.
After my MVD, I started getting a burning pain throughout my skull. Sometimes, it is worse than the TN pain. it also flares up my TN pain and radiates through the entire left side of my head/face/skull, almost as if the MVD "mesh" is poisoning my brain. The doctors have said that there is a large amt. of mesh, and that he was "generous" with the amount he put in. I know my body and can tell that the MVD is what is making my pain worse, but no one seems to be listening. I have been tossed around from one dr to the next; and currently don't have a neurologist, just a pain management doc.
they are currently trying injections to see if they can calm down the occipital nerve, but I know it is more than that. Has anyone else had this pain after their MVD? Any suggestions on how I can get a good "team" of doctors to work together?
Hi Tammie, so sorry that you are in so much pain! Do you still have contact with the surgeon? I would reconnect with him/her and discuss your current state. Maybe they can go back in and remove the excess amount of mesh or replace it with something else?
I wish I knew…sending positive thoughts and hope that you can get someone to take you seriously and help you!!!
(( hugs ))
Mimi
There is a complication that an MVD can cause called anesthesia dolorosa. This is a permanent pain condition and there isn't much help for it; although I have heard of PENS units being installed for it. Unfortunately for both of us, we had an MVD and ended up worse. I am in the same position. I had my MVD last September and complete heck broke loose. I have lived in 24/7 pain for the last past year with absolutely no break. I go to a pain clinic. Sometimes the meds work,, other times they dont. I am still looking for answers or AT LEAST to have a doctor say that this is indeed anesthesia dolorosa. Funny though, they usually wait for about two years to diagnose you.. right around the time the statue of limitations ( right to sue) runs out. I have noticed that alot with people that it took forever to get diagnoses for as well.