Comments for

Comment on Major Research Update – The OPPERA Study: The Largest TMJ Disorder Study To Date by David

David — Fri, 10 Feb 2012 04:53:00 +0000

* I posted this comment on the may 2010 post, but just found this. So coppied here as it’s more relevant:

Of course every person is different, and with this disorder, often
*very* different. But personally, I’ve always felt like TMJ, not always, but is
often a chronic pain as a result of another more acute cause. Of course
I’m only referring to the chronic cases, but like Fibro, IBS, and a
whole bundle other, TMJ describes the symptoms, patterns, etc, but not
the cause. Thus this study supports my conclusions!

Maybe the cause is so illusive because once it’s found, it’s attributed
to a more acute ailment, treated, and the chronic pain diagnosis
eventually heals with it. Thus these chronic pains have a host of
different causes, but once they get bad enough, with enough symptoms,
they look the same. Personally, I think this has a lot to do with all
the chronic pain conditions, as they don’t necessarily have unique
causes, nor each necessarily having single treatment.

I have a lot more thoughts, but for later. Thanks for posting this!

(PS I’m in the trial, and didn’t know results were out, so it’s cool to see!)

Comment on TMJD and Related Disorder’s Patient Bill of Rights by Lorelei

Lorelei — Wed, 08 Feb 2012 10:54:00 +0000

I almost cried, reading this. This should be required reading for all medical practitioners who treat TMJD patients and should be posted on the wall of every exam room. Thankk you, Candy.

Comment on TMJ Disorder Glossary by Lorelei

Lorelei — Sun, 22 Jan 2012 00:32:00 +0000

Actually, I just found the information on the surgery that you have. That answers part of my question.
The second part, however, about any non-surgical treatments for fibrous ankylosis, I am still having a hard time finding.
Am I wishing for something that does not exist?

Comment on TMJ Disorder Glossary by Lorelei

Lorelei — Sun, 22 Jan 2012 00:25:00 +0000

Thank you so much for this. It is truly helpful in my research. I am currently trying to find out information on non-surgical options for fibrous ankylosis, (are there any?), and every website I find is in doctor-speak. Do you have any information on this and/or on the surgical procedure they use to correct it? I have to go back in five days to find out if it’s fibrous or boney ankylosis, (just by “feel” I think it’s fibrous), and he said if it is fibrous, he will do an arthroplasty to correct the adhesion and insert a fat graft. That’s not much information. Still not sure what’s involved in the surgery.
Thank you, as always, for your help and support.

Comment on I’ve Had It! How to Tell If a TMJ Website is Scamming You by Lorelei

Lorelei — Sat, 14 Jan 2012 16:43:00 +0000

Great advice, Stacy. In our desperation for relief, sometimes we want to believe things that are too good to be true and we are tempted to spend any amount to obtain the help that these sites promise. My mother always said, “If it sounds too good to be true, it probably is.”

Comment on The Raffle, The Future, & Two Surprises! by Nicole Moorman

Nicole Moorman — Thu, 01 Dec 2011 23:46:00 +0000

Are the packages still on their way? I keep eagerly awaiting one on my doorstep!

Comment on Living with TMJ Disorder: The Magical Powers of Friendship by Tiffany Harrington

Tiffany Harrington — Sat, 26 Nov 2011 03:35:00 +0000

This article brings up an important point-how do you maintain or create a social life when chronic, debilitating pain is constantly in the way??? I don’t know how many times I’ve avoided phone calls, outings, dinners, etc…with friends and family because I don’t feel good. I try to explain that I have to answer phones and talk at work, which is difficult in itself, and when I arrive home, I just physically can’t socialize. Most people don’t truly understand it; the people in my life that care about me do try to understand though. Sometimes it means texting or instant messaging on facebook instead of a phone call; sometimes I reschedule things for a time that I know I’ll feel better. For example, a Saturday afternoon, after I’ve slept and relaxed, is a better time to talk to me or hang out than a Friday night, after a long week at work. It’s never fun or convenient to be in pain, but when you are always in pain, you learn to work around it. It is a blessing to have someone to talk to that knows what you are going through; thank you to Stacy (here on TMJ Hope) for talking to me! I think it’s important to try, as best as possible, to maintain your friendships. It’s not always easy, but if it’s too hard to be friends with someone, that person may not be a true friend… It shouldn’t require an extreme amount of effort (at least not usually). Your friends and family love you; they don’t mind staying home and watching a movie instead of going out; they will sit with you in comfortable silence to spend time with you, if need be. My husband is amazingly patient; he wakes up when I’m crying in pain in my sleep and rocks me back to sleep. He eats soup, instead of steak, in united solidarity with me. I don’t have many female friends that live near me anymore, but maintaining communication with friends is so important! Also, if you’re a parent, maintaining some sort of “adult time” is vital to your psychological well-being!!! Thank you to my friends and family that are with me, and there for me, when I need them!!!

Comment on The Raffle, The Future, & Two Surprises! by Anonymous

Anonymous — Wed, 23 Nov 2011 18:57:00 +0000

Thank you so much, Lorelei. I feel privileged to be able to do this even part time, and really look forward to the day when it is possible for TMJ Hope to be my only “job.” :)

Comment on Breaking: FDA Orders Review of TMJ Implants by Anonymous

Anonymous — Wed, 23 Nov 2011 16:26:00 +0000

Hi Lorelei. I wish I could tell you the definitive answers to your questions, however, the truth is that we just aren’t sure. From my *personal* experience I can say that what most surgeons/manufacturers etc say is that the average/expected life expectancy is about 15 years. This seems to be the norm for most types of implants (hip, knee, etc).

There are so many variables that go into someone’s situation, from why they had the implants in the first place, to how they take care of them, to if they clench or grind putting unnecessary loads on the joints… There can also be issues like infection, an implant breaking, those sorts of things, which force patients to have the joint replacements removed & replaced.

Hopefully this FDA inquiry will bring us some more definitive answers as far as the lifespan of the implants.

Comment on The Raffle, The Future, & Two Surprises! by Lorelei

Lorelei — Wed, 23 Nov 2011 15:49:00 +0000

I am so honored to be a part of this wonderful organization. I know that I coudn’t make it through this journy without TMJ Hope and I know that so many others feel the same way. Thank you for your hard work and your committment. And thank you, most of all, for the hope.