I am shocked and devastated. My insurance is denying my surgery next week, because in May my doctors note states that I reported a decrease in pain. Yes, my TN type 1 stabbing pain had decreased but the type 2 pain is constant. I called my ins. company and neurologist, and am awaiting a call back. Also emailed Dr Casey to see what else I can do.
Has this happened to anyone else?
Ohhhhh crap…hopefully dr c can change …add to the diagnosis , symptoms…the wording somehow?
Please let me know how this goes
Kathy, that is shocking, considering TN pain changes from one minute to the next.
I’d ask both Dr. Casey and your Neuro to write supporting letters as to why MVD is necessary.
Crossing fingers and toes that this can be done ASAP. So sorry you have to go through the extra stress of this, ((( hugs ))) Mimi xx
I’m so sorry to hear that. Try not to get too stress about it as that will only make you worse. Hopefully, they will get this all straightened out for you. It shows you how much even insurance companies understand what TN is. Just like Mimi says: we live minute to minute. Good luck and let us know what happens!!! 
Sorry you are having to deal with this rubbish.
Hopefully your doctors can have some influence with the insurance company, nobody needs this aggravation before surgery.
Good luck getting it sorted,
Hugs Trish
Insurance companies are cold. If any person working there felt nerve pain, at least once in their life, they would never deny this. Hang in there, keep complaining to them, until you get your way. Most people never experience nerve pain, so most people have no idea just how dreadful it truly feels. Keep at them, I hope you hear good news soon.
Thank you all for your support, I really appreciate it! I have called my ins. (3 times 
bet they love me! Finally, was able to talk to a human. Now, it’s a waiting game…they are calling my neurologist and Dr Casey today. They said it was denied because I haven’t tried a more conservative procedure like gamma knife, which Dr Casey told me never to have.
@Cleo-thanks for the article, very helpful!
Gamma-knife conservative procedure? Uhm, it’s a destructive procedure…weird.
My neurosurgeon told me the same, never do it.
Positive thoughts Kathy!
My neurosurgeons gave me options but told me MVD was the best chance of resolving pain, it is the "gold standard" for those healthy enough to endure surgery. Probably the only reason there is any reduction in pain is because of warmer weather. Most of us do better when the temperature rises, that doesn't mean you won't be in even more agony when Winter comes! The sooner you can have MVD, the more likely it will help. Good luck, and fight those stupid insurance twerps!!!
I bet you are devastated :( I can't believe insurance companies can get away with that, they will use anything to not pay! I am very very lucky - my husband's work has offered him free cover and if we add me on it covers pre-existing conditions which blew me away, can only wish that other countries were like that too :( I hope this all works out okay - a "decrease in pain" is still pain!
Mimi- so true! What are they thinking!
Suzanne- I know the hotter the better for me, but then everywhere I go people have air comditioning on;)
Poisonivy- you are right!
Talked to Dr Caseys office and ins co multiple times. Dr Casey and the ins co have a conference call Mon btwn 9-11. Then I will know if I’m having surgery Wed or not. Luckily its only a 7 hr drive to Dr Caseys if I get approved
Oh gosh Kathy, the waiting must be excruciating. Hopefully the conference call will get it sorted.
Hang in there.
Big hugs
Trish
wow i have aetna HMo policy and they would not cover the gamma knife, i did not care since i wanted the mvd, but very interesting, thanks
Cleo said:
I don't know what Ins. you have.. here is an example of how Aetna provides coverage for TN procedures
Thanks Trish.
I just got a call from Dr Caseys office, he was unable to get the medical reviewer from my ins co to approve surgery, so its off. Dr Casey was great sounds like the reviewer is an idiot. Wonder what his reply would have been if his wife had TN. Still trying to appeal. Anyone that prays I appreciate any prayers. Thanks.
Oh Kathy, I’m so sorry to hear this. I hope through appeal you can get your MVD!
Keeping you in my thoughts and prayers, sending positive thoughts as well,
(( hugs )) Mimi xx
I am so sorry to hear this! I hurt for you! Prayers going up.
Oh Kathy, so disappointed for you. Maybe the appeal will be reviewed by someone different with more concern and compassion.
I wish we could do something to help, it sounds like a ridiculous system.
Sending you more big hugs.
Trish
Hope you can go higher up the food chain with your appeal -- how long does THAT take????
since I am currently dealing with a 4th back surgery being scheduled for the fall.. and now.. I will find out tomorrow when I will have my right shoulder operated on.. this week or more that likely next due to a re tear of the rotator cuff.. actually the MRI shows it's ruptured.. I just had it done in Nov 2012 and all I have done since then is physical therapy... so I am trying to figure out how I re tore this. I have learned how to be very careful with how I explain my pain. I hate it when a doctor mis understands my explanation or flat out puts the wrong info in the report. Hopefully the doctor can correct the wording and the surgery will go forward.. keep us informed.
Thanks everybody! It’s amazing we are reading the reasons for denial and if the medical reviewer would have read the my md notes and my letter, all his reason would be invalid. He ends it saying that there isn’t a protocol set up for this set of symptoms…So, ok you have one of the guru’s of the TN world (Dr Casey) on the phone with you, why not listen to what he has to say. We are sentence by sentence dissecting the denial and plan to re-reappeal and have a different md review it.
Mickey sounds like you are going through a lot, wish you luck with your surgeries.