If whom you see tries to give you any guarantees or "sell" you radiation - run don't walk to a second opinion! Ask what their long term success rates are, how many per month they do, how many TN/ATN patients they have...
The pain I had was TN I - lightning strikes out of nowhere on my cheek - the first episode found me in ER on narcotics that only worked for 2 hours -- I had no idea what I was in for.... I consider myself most lucky - because I was diagnosed quick - and put on trileptal that took the pain away -- then had to go up on it - and lost my word memory - would look at dog and not know his name -I was going on job interviews and I would have such long pauses in my answers.... so before TN got really really worse - the head games and depression from the meds wore me down. Sometimes could not eat or smile or walk the dog - OR have the ceiling fan on my face!
There were times I fell down on my knees in my cubicle (the job I had to quit - because I couldn't work with kiddos on that med)... my boss humiliated me because of my memory issues (just graduated with masters - so I know it was meds) - I had only been there a few months when TN struck-- I tried 2 other meds...they did not work like trileptal - but left me druggy -
My neurologist gave me a short term prescription of Ritalin (got the idea here) so I wouldn't be so sleepy and so I could focus to research what to do.
I saw that MVD was best - and I was nearing 48 and planning my wedding --- but I kept thinking - nah - It will go in remission for a long time --- but did not.....
Even after MVD -- 11 weeks later 5% PAIN came back and had to go on low dose meds for 8 weeks -- I was devvvvvvastated - thought it had failed. It takes a FULL year for all that stuff to heal in there - and I knew that - but was once again stopped in my tracks for finding a job in my new field. Dr. Casey while in there found 2 nerve compressions to fix!
After TWO more long months - I tried to go off meds and it was grrrrrrreat! - It completely went away for 10 months. Now have the 2-5% pain - once or twice a week - throw a lidocaine patch on it and call it a day! I keep my intelligence and the pain is gone till next time.
MVD-
Recovery room for one night in surgery - I asked for NO catheter - I got sick a couple of times - because I was eating the hell out of the ice -in my ice pack! Then 2nd night regular hospital room. Felt like an elephant was sitting on my head. I purposefully did NOT look at MVD videos - ewwww -- but they do put your head in a vice (mine was for 2 hours) while you are in surgery so that your head doesn't move -- I already have bad stiff neck - so holding my head certain ways would hurt - but it was anticipated - not like TN shocks that come out of nowhere -- this pain I knew to expect. I hate vicodin - makes me ill -- so I think I had another pain reliever - and usually they tell you to get on advil in a few days.
Since we were out of state - We stayed in the hospital sponsored apartment ( 2 nights before MVD) and - one more day before our drive home - was afraid to fly soon - head pressure? Some do.
So we spent 3 days driving home while I slept 18 hrs a day in hotels!
Got home and did nothing but go to the bathroom for 3 weeks. Surgeon said move when you are ready. I was too afraid to even bend down and pet the cat. So I just slept and dozed and watched TV for 3 weeks.
Some people take longer - some shorter -but the key is not to over do it and watch for what I think is the scariest thing is small percent get CSF Leak.... surgeon should tell you this.... and if it happens - go to ER or back to surgeon and get it fixed.
Some here have got it and not done anything about it for weeeeeks ! That is also a massive headache literally when losing that fluid I hear.
So all that was in Oct. 2011. To answer more directly - sorry - pain from TN was : Wham / Bam / Got Ya / Zap always unexpected - got PTSD as many here have
The pain from after surgery - was constant throb/ache/headache and nothing unexpected - except trying to get comfortable by not laying on that side at all for 3 weeks! I'm fortunate.... I may have to do it again --- Sometimes MVD last 3 months, 3 years, tops is about 3 decades... So that's where I placed my chips --- I went into it with no pain that week and woke up with no TN pain either.
I was in remission when I went to Michigan -- I was weaning off med and not in pain - THAT was THE hardest part to sign those papers and knowing I could be in pain again any second - or be in remission for weeks or months -- but I had to get it done - the fear of the operation was driving my anxiety up so high. Just because I hate general anesthesia -- I trusted Surgeon and his team -- its all they do.
Dr. Casey said that if you are going to have surgery in your brain/crainial area - that this is a lower risk one for complications, long term damage, etc..... comparing to surgeries that they have to dig out embedded spider web like tumors, or stop brain bleed from car wreck etc. But you will have to read the fine print when you sign off for it... I didn't LOL -- I saw enough on here!
Some people lose hearing, or sounds like your ear is in water for (most common) weeks , months, or
(less common) forever on the MVD side.
Hope that helps---sorry if I went on too much! I think if you look at my page on here - it will fill in the other parts I didn't hit on here. you can go here.... http://www.livingwithtn.org/profile/KcDancerKc and scroll down to the red text : Profile Information and there is my story and under the Groups Tab -- I posted the rest under the MVD group.
This spring - I have seen more postings about MVDS than ever on the main boards than since 2010..... Most good - Some great - Few not good at all. Before you get the book --you can go to google and find the McGill Pain Scale - or pain rating - that's what Dr. Casey had me email to him before I flew there. Might help if you fill it out now and show your consultation doctor. Watch his reaction to your proactive-ness... if he poo poos the print off - go with your gut on what to do.
Like I said too - the TNA website is good and where the official research stuff is found updated - and there are message boards and resources there too
--- but I come to this one still because I get to pay it forward -from all those here encouraged me in my darkest hours and pulled me into a place of hope!
Sorry sooooo long- whew!