I went to see my neuro today, finally after waiting 8 mths in desperation. He told me my TN is at a very serious stage, the meds dont help much only the Fentanyl Patches (125mcg every 3 days).The meds i take are very strong and TN is not gonna go away so he said i have the option of surgery,he said the nerve is not compressed . The injection which lasts for every 3 months forever OR cutting the nerve which will leave my face numb with maybe eye problems, eating problems, etc, and a mention of MVD. I feel like i have just been stopped smack in the face by a train. What a choice!!!! Does anyone have any information on any of these or is there anyone who has had any of these done.If you have had it done would you have it done again. I honestly dont know what to do or think, please if anyone can shed any light i would be so appreciative.
Thank you to all of my friends on this site who have helped me through a tough couple of weeks. Your kind messages have made me both smile and cry (in a good way). Sorry i haven`t got back to you, you all know who you are… i hope
My MRI was “normal”. My symptoms were extremely atypical TN.
They did an MVD and found a compression. Looks like most of the stuff is fixed. It’s now almost 5 wks post op and things are starting to settle down.
I DID, however, ask my surgeon before the operation, “what if you don’t find anything, do you just cut the nerve?”. I had seen some posts referring to that, thinking “numbness would be better than nothing”. His reply was that he would NEVER cut the nerve, as every time he’s seen that done, the patients are then saddled with numbness that becomes intolerable.
This comes from a Neuro in Toronto who does more than 50% of ALL the MVD’s in Canada. So it’s not like he just does the odd one here and there.
Just thought I’d share that. I can’t speak for anyone else, but I sure felt better knowing he wouldn’t just go in there and sever the nerve and create a NEW problem!
Just to add my two cents, when I visited with a Neurosurgeon, he said that it is VERY difficult to see if there is a compression on the nerve when the MRI is done on young people. I am almost 42 and he was referring to me vs. 80 year olds. He said it is because our braines our bigger. I didn’t have that type of scan but he wanted me to hold off as he is working to develop something that works better - possibly in the next couple of months. However, that is in St. Louis at Washington University Scool of Medicine (highly accredited). Bottom line, that is why the other ladies’ scans were normal but MVD proved otherwise. Also, I know that book Striking Back suggested going to a dentist and being made completely numb - can you live this way for the rest of your life?? There may be other options to try first because nerve injury cannot be reversed. He discussed all options with me. He thought MVD or Gamma Knife would be best but none of the nerver destructive processes because of my age. His words “I would start down that path very slowly and wait until you are much older”. His point is if you are 80 and probably don’t have many years left, you could probably put up with it. At our age, we might have another 40+ years to live like that.
Good luck and I have no first-hand experience. But I truly feel for you and know you cannot continue as you have been. Just don’t make a decision out of desperation unless you know you can live with the results.
This is such a hard thing to decided… Nothing showed up on my MRI yet a huge mess ( want for better words) when the decompression was performed… LIke Debbie said I was told the same thing our brains are bigger …etc… A hard decsion to make i know
My heart and prayers are with you.
peace and love.