Excrutiating Headaches After TMJ Surgery

My 19 year old son had surgery for severe TMJ. Prior to surgery he had headaches that were associated w/ the tmj. Now he has TERRIBLE headaches. If you put your hand on different sections of his head you can actually feel fluid moving.  I have taken him to 3 neurologists, endocronolgists, rhuematologists, allergists, back to his tmj specialists. We even went to Memorial Sloan Kettering to rule out cancer of the brain. Thank Goodness it isnt.  He has had mri's, cant scans, botox, cortizone injections, massage therapy, physical therapy. You name it. He has been prescribed tons of medications.  His quality of life is slowly deteriating.  He is so distracted by his pain he cant study hes getting depressed.
Any suggestions? Has anyone ever experienced this?
Thank You
I truly look forward to your reply.

[ggreg]

Well, I suppose this whole thing depends on how far out he is from his TMJ surgery.  See, could be his worsened headaches are a product of the insult that surgery does to a person, and he'll get over it within a few weeks.  If he's months out from the procedure, coupled with how you can actually feel fluid moving (or could be muscle spasms), then he may have an infection that MUST be treated forthwith (antibiotics and perhaps draining fluid) or, if it's muscle spasms, could be a nerve was damaged during the operation OR the operation didn't quite get the temperomandibular joint back in place correctly.  Of course, looks like all the scans and tests would have revealed all of those possibilities.

So, I think you should take your son to a hospital in a university setting to get to the bottom of what happened with that TMJ operation, even if you have to travel, and bring ALL scans and MRIs, both the pictures and the reports, PLUS records made whilst the TMJ surgery went on, and see a neurologist at that hospital.  I might add that I hope his regular dental health has been routinely taken care of, just in case it's a tooth that has gone bad in the middle of all this, the pain would be very bad and if he were to push on each tooth on the side of his head where he has headaches, and if he feels pain shoot from there, why, he'll need to of course have a dentist fix it.  But I don't think that's it.  Usually infection causes headaches like that, or muscle strain can do it, or a pinched nerve.

I have pain in my back from an accident, and even tho I take medications, I still find myself being just like your son, I can't focus on things, I get depressed, and as I am an older person, I have wound up on disability.  Since he had headaches before the TMJ op, and now they're worse, well, this tells me he still has a problem in that joint that, instead of being made better, has been made worse.  As I said, a little nerve or even maybe a displaced muscle or pinched blood vessel, or infection from the operation, or the joint not being fixed right, one of these things relating to the surgery has not made him better, but rather has accidentally made it worse.  By going to a hospital in a university setting, they will have not only the top neurologists in your state there, but also the top dentists and TMJ people there, so they could do a comprehensive workup on how that joint is doing in all respects, all in the one hospital place, to get to the bottom of this thing.

I might add, while you are setting up your university hospital visit, your son needs to be on some better pain killers than he's had, like a morphine derivative drug, until he can get in with your state's university hospital docs.  Also, your son should be given antibiotics just in case he has an infection.  To treat his symptoms now aside from medicine, YOU can regularly rub out his shoulders and comb his hair or scratch his head, and HE should practice dropping his jaw just an inch open in a relaxed position and keep it that way for five minutes a few times a day.  You can also put very warm compresses on his jaw where it was operated on, that helps as long as the heat is on there.