Trigeminal Neuralgia Support Group

Trigeminal neuralgia, or Tic Douloureux, is a neuropathic disorder of the trigeminal nerve that causes episodes of intense pain in the eyes, lips, nose, scalp, forehead, and jaw. Trigeminal neuralgia is considered by many to be among the most painful of conditions.

418 Members
1,612 Posts
0 Online
Brain & Nervous System
/ Trigeminal Neuralgia Support Group

Microvascular decompression surgery

Mikey1014
Mikey1014

My wife had microvascular decompression surgery for trigeminal neuralgia on May 6th 2016 and for over a year and a half she has nausea and vomiting along with excruciating head pain that never goes away. We have over 50 trips to our local ER and no one can tell us what is wrong with her. She has lost 130 pounds. Doctors think her vestibular nerve may have been cut by mistake causing this. Was hoping to find anyone with a similar condition please help thanks

BostonTN
BostonTN
I'm so sorry to hear your wife is suffering from complications of her surgery. I have not had surgery or heard of this complication. Don't give up keep pushing on for her your doing a great job reaching out. I hope that you find answers. Positive thoughts and prayers are heading your way.
Stinkweed
Stinkweed
I am thinking about having this surgery as no meds. or procedures have worked for me. My pain is primarily in my mouth, my top teeth on the left side. My lip is involved and my nose and cheek at times. But it is the teeth that are the real problem and source of my pain. I have been using CBD oil for my pain, I put the oil under my tongue before I eat and it helps me with the pain. It doesn't get rid of the pain, but it helps. I may face and either or situation due to drug testing, i'm waiting for the results of the test. CBD oil is not suppose to have THC in it but my doctor said it was likely I wouldn't pass the test... I don't want to have the surgery but I may have to and I don't feel comfortable about the outcome of your wife's surgery.
Hopefulstill2018
Hopefulstill2018
I am sorry your wife is still having severe pain. I do understand though. My mom had her first microvascular decompression surgery in 2006 and then again in 2011 followed by Gamma Knife in 2013. After her first MVD she went about 6 months with no pain then when it started back it was much much worse this is what prompted the second MVD in 2011. This MVD surgery didn't change or relieve any of her pain. We ended up seeing probably her 10th Neurologist who suggested Gamma Knife. We live in Houston so she has seen some of the best world renowned Neurologists in the state but she still lives with this excruciating pain that is very much debilitating. My dad passed away shortly after her Gamma Knife procedure. I did a lot of research in 2013 and have started back again because there has to be some explanation.

What are the symptoms or anatomical changes in her brain did they say would make them think a vestibular nerve was cut? Was this a second opinion? My mom has lost a lot of weight since her first surgery but I attributed it to her muscle loss and lack of appetite.