Is it just numbness or a neuralgia type with constant stabbing/burning sensation in parts of the upper lip? Mine is driving me crazy lately, the deep set numbness in parts of the upper lip is possible to cope with, but the never-ending burning sensation is killing me. Sometimes it's really intense, e.g. when eating and speaking which makes me never really get a break from it
Have you discovered anything which can ease this s**t?
I know exactly how you feel. AFAIK, you're the only other person I found to have the same symptoms. I can tell you what happened to me over the past 22 months - no guarantee the same will happen to you. You may do better (I hope).
My cheek and lip was just heavy and deeply numb on one side for 6 months. I would get burning in my gum and teeth and the lip when talking or exercising, but somehow I could bear it (perhaps because I was expecting it to get better). 7 months post-op I had massive burning and pins in my lip. I could barely tolerate it. It sort of subsided. 10-12 months (when I wrote that cathartic post) I had a ton of tightness and burning in my lip and teeth and gums. Month 11 - all of a sudden the lip suddenly "felt lighter" like it had been paralysed up until then. I started taking a whole bunch of vitamins (C, D, other stuff I don't remember), massive doses of vitamin C, Acetyl-L-carnitine amino acid. I had a lot of burning and pins in my lip over month 12. TBH, I think it was just a coincidence. The nerve was simply coming back on its own. I haven't taken any supplements in at least 5 months. I tried electric acupuncture around month 12 - I don't think it did anything.
It's been 22 months. The changes since month 12 have not been as dramatic. Around the 18 month mark, the teeth close to where I've had most of the numbness have stopped feeling as stiff (the felt wooden before). But my cheek started feeling really heavy from time to time since then. The numbness is still there, but it's more of a bruisy feeling (like I've been punched in the face) and "the lip has been injected with rubber", rather than burning. As the bad side bothers me less, I realised that I have quite a bit of numbness on the other side, I just didn't realise it because the bad side was so bad in comparison. I keep rolling the lip on the bad side over my teeth, which really makes things worse. But overall, the lip is definitely loosening up. I don't think it will ever be normal though.
I tried Lyrica 75 mg for a week at the 18 month mark. I don't think it did anything. I've been told that you should go to as much as 300 mg per day. I may just try it again in a month.
I saw my hero surgeon at the 15 month mark. He didn't even remember when exactly he did the surgery. He just said that the infraorbital nerve failed to recover due to retraction trauma (the nerve is lifted away from the bone so the maxilla can be cut underneath), too bad. I'm a 1 in a 100 case. Others like me stop being bothered by it after 2 years - they think everything is OK, but the numbness is still there, they just don't realise it anymore.
tldr; the extreme burning could mean the lip will loosen up in a couple of months hopefully.
tldr2; as things get better you quickly forget how really bad they were. I think back to last year and wonder how I didn't blow my brains out.