Advice Post MVD

After a few years of suffering with TN, I finally decided to have the MVD surgery. Dr. Michael Lim from Johns Hopkins Hospital in Baltimore performed it on June 25th (I highly recommend him - I traveled from Arkansas just for him). I had a large vein coiled around the nerve, which were not visible on the MRIs. I felt immediate relief!!! No facial pain!

I am now about a week and a half post-op and am starting to come off some Baclofen and Cymbalta, but I haven’t touched the Lyrica or trileptal yet and will come off them much slower. Yesterday I started feeling just very minor TN sensations only during a couple of bites while eating. It didn’t hurt, but I felt it a couple more today. Has anyone else experienced this? I don’t want to stress out, but also want to prepare myself and my doctors if I need to do something different.

Thoughts from anyone with experience or knowledge?

I do know that it takes a year for everything to heal up in there !

I think as bad as TN is scary to come back -- withdrawl from Cymbalta can be a nightmare -- watch out for that one in particular!

I know you had one of the top 5 surgeons (in my book) in the world that treated you.

I would continue to test the waters, be patient, and get some topical relief with a prescription of lidocaine patches or cream .....as you come off the meds

It's been more than 1.5 years for me -- I had one year with no pain, and now have a patch on my face for 5% pain twice per week -- I'll take it!

I had pain come back - twinges - at week 11 after Dr. Casey MVD.... I was PTSD

Don't stress out, hard to say that - when you know you shouldn't and you know that stress can cause nerve flare ups!

Do you have any benzos? Clonazapam etc... to keep calmer? There is nothing different you can do right now and today....unless he suggests that you go back on all meds full blown - but

if you go to ask a patient.com and put in Cymbalta: The many many withdrawl posts really are scary. Since I read that, I wouldn't go back up on it, I would keep going down at least on that one --- from reading all those poor people.

It's only a week+, so I would call them Friday or Monday , so they can document, and do what you think is best for you until your follow up appt. (with local neuro??)

I'm hoping others will chime in - cause I feel like I'm not helpful at the moment because I'm so tired, but I wanted to jump in and say hi.

Many MVDs here as of late have been pain is less

not eliminated.... and the best results are those who get a few months or years with no pain,

MVD is not forever, and sometimes it takes 2.

I would do it again. The success rate is in the high 90%.... but if you had it for a few years before MVD the rates are in low 90% -- still good chance of long term relief.... better than 20 years ago.... One day at a time now

Hi! Just saw you & I have the same excellent neurosurgeon - & I travel all the way from Kansas to be treated by Dr. Lim! I unfortunately had bad experiences with neuros here in KS which is why I started seeing Dr. Lim! Wishing you a successful recovery! :)