Sue;

Yep, the joints are IN;  they are not working well, though.  Something is preventing me from being able to open the right joint and, as they are meant to work together, it

s keeping either side from working. It feels like there's something stopping movement and I don't know what it can be.. it's NOT just the pain since I tend to push through that, no matter HOW bad it is.  On a good day, I can open enough to put my pinkie in my mouth.  on a bad day (and more and more they're bad), I cannot open enough to use a spoon!  I know I'm absolutely frustrated with this and I really DO hope that the surgeon will figure out that this needs to be fixed, immediately and before the muscles shrink even more. 

I leave for Boston again on Friday (this week) so, hope to know something soon after!  Also, the holes the NY surgeon created in July are still not closed-up.  --makes my ear leak fluid day and night and it's gross!  One thing I do know is that it smells like metal so, seems that the fluid is around the actual joint and not in the bone... and, the other side (without the holes) is also full of fluid around the parotid gland.  This means that, even when I can put food into my mouth, the salivating causes severe pain! 

I just don't know what they will do or if they will do anything.  And, I am a LOT worse off than I was with the loose joints in.  At least then, I could open between 15 and 20 mm.  Now, I'm lucky if it's about 5mm.  THAT's rediculous after going through these couple of huge surgeries and all of the months of waiting.  And, of course, it's incredibly frustrating! 

You know, it's SO HARD to tell people that it's not going well.  This outcome could not have been worse, though!  When I get notes saying that people are happy I'm healing.. and I know I am not, it's difficult.  I know it shouldn't but, it DOES keep me away from anyone who knows what the plan was prior to this year's mess starting.. 

Anyway, when I'm up in Boston this next week or so, I'll be sure to post'  regardless of what happens!  Hope y'all have a nice easter!

@

Thanks, Sue.  I was thinking I should tell the surgeon to just clip the temporalis muscle-flap he performed to attempt to close just one of the three holes.. didn't even try to close the others.. crazy!  I think if if is clipped, i might be able to move the jaw... and that would be GREAT!  It's jsut SOOOO irritating;  so PAINFUL, and I hate not being comfortable eating or talking (the right side of my lips don't open much either.. which I thought was because of the swelling-- nope).  I just HATE this and, since I don't like being around people now, I sit at home alone and contemplate the fact that this could be it, forever!  I am going to try my dangest to not allow that, though...  I may need my sister in the exam room with me so that someone bolsters my confidence.. maybe.  Im great at advocating for others;  myself?  Not so much.

Thanks so much for your notes.  It's been incredibly difficult to be alone so much of the time and to keep it all to myself.  It's just that I didn't want to disappoint so many people who I know were rooting for me!

I PROMISE I will be in touch.. not gonna just run away agan, ok?

Again, thanks...