I had another thought that might help you...
I am wondering if the pain you are feeling is because of cranial nerve damage. I am sure that is whey I get the facial pain that I do. Your pain sounds much worse then mine (it is tolerable) but I have heard of other people that have found it excruciating. I was sent from doctor to doctor being written off until my NS did a gag reflex test and found out I don't have one at all (which indicates cranial nerve damage). What amazed me is that no other doctor thought to do that, my problem could have been diagnosed so much sooner. Even my NS was surprised that no one had ever done it. He told me that it was quite a bit deal to find out I had none. So my question to is, has anyone done a gag reflex test on you?
I too have severe popping of my jaw, right side worse than left. Sometimes i cant east chocolate because it feels like it dislocates. Yawning is terrible on it so I try and hold my jaw to try and keep it from opening it too far. I went to my previous doc for this and he said go to a dentist. I was very angry, I dont know why they didnt tell me that instead of seeing me for no reason.
You would think that people in our condition should have the right to be comfortable, and medicated! So many people out there get pain killers and misuse them, then we tell our doc's how much pain we are in and we get treated badly. It is the system at its best. In Washington you can get a prescribed lethal dose of meds to off your self, but if you arnt terminal, then no med's for you. I think that is very wrong, and the law is terrifying.
Rcallejas, I understand how you feel, no one should have to live like that. Maybe you should research if there is and joint injection that would re leave your pain atleast for a little bit so you could eat.. Is this affecting your weight yet?
I have had jaw pain for months too before and after surgery. It hurts me to chew and I can't even laugh without pain. My jaw snaps shut when I am falling asleep, waking me up. I was told it was TMJ too and I am sure that it is from Chiari because it worsens with my headaches and is included with other facial pain.
I know you feel like it is an endless circle... I feel that too almost everyday. But we need to keep hope that it will be figured out. I find I have good days and bad days so I just try to hold onto the good ones...
I would keep pushing for answers that is what I do when I feel it's hopeless.
I get jawline pain that is very painful also........hang in there
there will be days that feel not worth living, but tomorrow may be better.....
Hi and welcome, I do get jaw pain on occasion, it is mostly when yawning, I get a burning sensation and my jaw locks for a minute or two.
As selma said get checked for the other Chiari issues.
Ray
HI and welcome to the Chiari forum.
Many with Chiari do get the jaw and facial pain u mention. As for the TJMD that u said u were dx'd with, I wonder if u may have Ehlers Danlos hypermobility type as it allows joints to pop in and out of joint.....which may be the reason for ur TMJD.
As a chiarian we r prone to auto immune issues....were u tested for EDS, tethered cord?
Happy to welcome u to our little family here and hope u find the answers and support here that u seek : )
"selma"