I had an MVD in 2000 due to having Atypical TN. My MRI did not show anything either and was told that the entire nerve was damaged. After my surgery I had complete relief for 6 years. Unfortunately 6 years later the nerve regenerated and the pain came back. I am told this is close to impossible. I was unable to have another MVD due to scare tissue so I had a balloon decompression done thinking if they they could help the pain by deadening the nerve endings this way. This surgery went wrong and left me with a condition called Anesthesia Dolorosa. My doctor explained it as the nerve was damaged to the gray matter in my brain, which is untreatable. I am still left with the TN pain as well. I'm allergic to morphine and all the anti-seizure meds so my options are limited. If I had it to do over again I would still do the MVD, it provided me with 6 years of relief. I completely understand your pain and would recommend the surgery as the meds seem to alter your life so much.
I developed TN in Sept 2011, had the MRI and was told they did not see anything, was seen by a neuro group and treated with Meds, which are have been making it difficult at work and to function normally, decided to pushes for other options such as Gamma or MVD, was transfered to another neuo, (headache specialist) who set-up another very specific MRI, with specific instructions 1/2 page, from the surgeron on what images to take and how. That MRI has shown a blood vessel pressing on the nerve, when I ask the neurosurgeron why the 1st MRI did not show it, he indicated that the 1st MRI did not go low enough and missed most of the nerve, My advice is to press for the a specific MRI from a neursurgeron that does Gamma or MVD surgeries.
I really appreciate your advice because I was told by my dr to do another gamma knife procedure and when my dr set that procedure up my dr had died of Cancer so if this next infusion don’t work I will be searching to go back and do another gamma knife again. Thanks do much
I'm so sorry everyone...have had a very crazy week or so...everyone's information is so great and valuable! I ended up in the ER last monday, where they put me on a high dose prednisone taper, which is ending today, and they also added nortryptaline at bed....the prednisone seemed to give a little relief the first couple days, but then I got a bad sinus cold on top of the TN and I was a wreck for the past few days...I did have a couple good days with my kids so I am thankful for that...I also got in with the new neuro clinic for this upcoming friday! very very very excited for that!!! I hope that with the new neuro dr I will have a better idea of what my next options are since that even with the new meds, i'm still having days that are leaving me in unbearable pain...Thank you again for all of the insights, well wishes and just understanding where I am coming from!
There is nothing wrong with being scared. Many people can't comprehend what we go through. I have wanted to shave my head so I din't have my hair brushing up against my face because it was so painful. Who else would get that except the people here.
I tried the injections too, but the didn't help. I am waiting on my MVD date. The injections aren't bad especially considering what we already go through. The surgery used to scare me, but I decided it was scarier to live with this for the rest of my life. I am a fighter and always have been. I am focusing on the recovery and that just keeps me thinking of a positive out come.
It sounds like you have a great GP! That is usually a struggle for a lot of people.
I have been there, we all have. We have all broke down and cried, felt helpless and scared, but you will make it through.
“Don't be afraid of your fears. They're not there to scare you. They're there to let you know that something is worth it.”
― C. JoyBell C.