Chronic Pain

I'm curious how many of you TMJ sufferers have other chronic conditions such as fibromyalgia and chronic fatigue. What about PMDD or other hormone issues?

I'm having a difficult time figuring out the layers of pain I have, and am just hoping for some insights from this discussion.

I've got hormone issues, but that's because it's a side effect of being on long term pain medication. It's nothing to bad, but when one of the effects of hormone problems happens it's normally something big and noticable to everyone around me.

Also part of my problem is that every since my injury that started me on the road to TMJ problems my body is constantly trying to destroy the disc (cartilidge between the upper and lower jaw) on the left side. (My right disc was removed 4 years ago because it was to damaged to put back in location when it dislocated)

I'm lucky though in that I have a great Dentist (who's also a MD) who understands that we're not just after drugs and that the pain is real. He actually yelled and had a nurse removed from caring for me in the hospital one time because she refused to follow his instruction that post-surgery I be on morphine PCA and demeroal shot as request for the severe pain that I would be in. (It's funny how people can stand there and tell you how YOU feel, I didn't know they had invented a measuring device to detect how much a person hurts!)

If anyone in TX needs a TMJ specialist he's one of only two in all of San Antonio, and has 20 years plus experience working solely on Maxiofacial and TMJ surgery.

Emails are always welcome concerning any aspect or question. I know how hard it was to find information for myself, and if I can help someone answer a question I'm glad to do so.

caffeyw@yahoo.com

Hi Wayne...could you please tell me after removing the disc, did it relieve your pain? Also does the joint "crack" (very loud in my case now). I have just been told that my disc is to be repaired or removed if necessary. I originally was told that I was to have a Joint Replacement but that idea has been filed away for now. I totally understand your pain - not at all very nice. Best Wishes to you.....NanaD

quote:

Originally posted by NanaD:
Hi Wayne...could you please tell me after removing the disc, did it relieve your pain? Also does the joint "crack" (very loud in my case now). I have just been told that my disc is to be repaired or removed if necessary. I originally was told that I was to have a Joint Replacement but that idea has been filed away for now. I totally understand your pain - not at all very nice. Best Wishes to you.....NanaD

The surgery worked GREAT!! I went in to the OR no being able to open my mouth at all, I came out minus the disc and was able to open it to just a little less then before I had problems. Over the next two weeks I was able to bring it back to where I used to be able to open it to, and after a few more weeks was able to actually open more then I had in the past. I'm a strong believer in surgery, it fixs the problem on the spot, it removes the pain from headaces and/or jaw pain right away. They only down side is the pain that your body has from being cut open. You have to get a good Dr. like mine, Dr. Young, who when I was rolled out of the OR and brought to my room put me on a Morpine PCA (pump that allows you to get the morphine via the IV by pushing a button, it does limit how much you can have each hour to prevent overdosing) AND Demeroal (this is the other common one they give in a PCA, however you can only be on one PCA) that I could request every 8 hours to help with the pain. While you will be in pain (but it should be controled if you're request your drugs and/or pushing in on your pain pump) it will feel a lot better then what you felt pain before, and it will go away over the course of the week as your body heals from the assault of surgery.

The Joint Replacement is only a good idea if you're either

1)Age 40-50 or older since the life of the replacement joins is generally around 20 year or
2)Any age that has severe trauma to the TMJ AND there's no way to construct to a functional (not necessiarly totally back to what it was) joint. This is because it is always better to try and get things to work with what you came with instead of putting in devices that for the most part have lives of 10-20 or 25 years.

You always want to try and avoid replacing whats there if what is there can be used to make a functional TMJ. For most people removing the disc solves the problem, and no other action is required. Now they'll make it clear to you that since you no longer have the disc on one side that you have to be careful not to overstress the jaw on the side that still has one. If they remove both sides then they'll order you to have restrictions on what you can eat and how to try and subconsiouly remember not to open your mouth too wide. Some examples are ways to without thinking limit the opening of your mouth to an unsafe point while (ie point at which you'll experience pain and have to go back to the doctor) eatting that huge burger on a huge size bun or limiting how wide your yawn is when yawning. All of these type of things are things that can help both before, but for sure after surgery.

I'd recommend that they do the surgery and try and reposition the disc to where it should be, but absent it being in good condition for them to do this I would recommend removing it and having nothing put back in it's place. Nothing has to go for it to function and for you to be out of pain. Insert a replacement and you're not just looking at pain from the surgery, you're looking at a good chance for continuing pain just from the replacement, and the fact that they'll have to replace the replacement some years down the road. If all looks well take the disc out and live with that. I've done that for 4 years on my right side, and have no problems there, no headaches and no pain in the jaw on that side.

My left side is the only one that conserns me since he was able to put the disc back into place. My worry? It's that if something happens and causes the disc to slip I'll have to have the same surgery again to remove it.

As always if you have any questions, comments, need help finding a doctor, or need help fighting with the insurance company to make them cover TMJ under medical insurance (Numerous states now REQUIRE that medical insurance cover the TMJ just like they would if it was the knee joint) drop me an email at caffeyw@yahoo.com

I'm always glad to help out since I know the nightmare people with TMJ problems go through from trying to find someone that has a clue as to what is wrong, and then finding someone who can handle the problem once you have a clue what it is, to getting insurance to cover it instead of making it a "dental" plan issue.

Thank you so very much WayneC for your reply and information re removing the disc. I feel more comfortable now knowing how it all works. I am totally fed up with the pain as is everyone else around me as my "fuse" is a little short most of the time due to the pain. I also have a hearing problem in that the ear feels like the jaw is pushing back into the ear. My Specialist said this can happen and he will be more sure about the problem when the surgery has taken place. I am 6o so I am hoping I don't have to have a joint replacement. My problem is on the right side but he will be looking into the left side whilst surgery is taking place as that side is now starting to cause pain due to "overloading". Here in New Zealand "everyone" is covered by the Accident Compensation Corporation (ACC) and pays a levy along with our taxes. People can still have private insurance but it is mostly way too costly for the average wage earner. Hence we have to fight this ACC at every twist and turn. You should see some of the horror stories people have put on the ACC Forum. Our Government sure has a lot to answer for!!!
The only good thing that has come out of my TMJ problem so far is, I stopped smoking after 45 years!! Problem with that was weight gain and heaps of retail therapy for new clothes
Once again thank you so much for your reply. I have added your email address to my Addresses. Best wishes to you with your problems......NanaD

Hi Amy,

I have severe PMDD... You can privately email me and we can discuss if you'd like.

Tami

I really appreciate your long reply, Wayne (and I am VERY interested in what you say about hormone issues as a result of pain medication - I will be starting a new thread on this in a second)... but also, let's keep in mind that it is hard for us to know what is best for someone else just by what they say on a message board.. well, it is hard for us to know what is best for someone else, period, since we're not doctors.
The criteria you list for total joint replacements are the general guidelines. Of course many patients that need total joint replacements fall outside of these guidelines, because we're such messes lol. A lot of us have had trauma, as you mention, or many surgeries rendering our jaws useless. Yes, it is generally accepted that one should have total joint replacements later in life to avoid multiple surgeries to replace them, BUT, if it means your quality of life - you make the decision you have to make. You know?
I had my joints put in at 24, and so far I guess it has been a good decision. There's part of me that is ok with the fact that I can't have anything else done - otherwise, sometimes it just turns into this awful merry go round of surgery.. one after another - and when does it end?
It definitely is better to try to work with what you have.. but I've also met people who have had 30+ surgeries and are just totally taken advantage of by physicians who should have replaced their joints years ago.
Also, removing the disc and replacing it with nothing can be a bit of a gamble. Many people, including myself, have really awful issues with scar tissue and bone fusion. As soon as my discs were taken out (and nothing put in their place), my joints fused shut and I couldn't open at all. I then had a piece of my temporalis muscle placed in the joint and did MUCH better.
I think another thing to mention is the idea of being conservative with surgery. Sometimes, it's better to be more aggressive with surgeries so that you do not set yourself up for having 10 or more... if your doctor sees that you will probably need the discs removed, why not do that now instead of putting yourself through (for example) an arthrocentesis, arthroscopy, and then arthroplasty with disc repositioning? Of course, this is just my opinion, for what it's worth. We all have our own specific circumstances.
Nana - congrats on quitting smoking!!! That is AMAZING! How did you do it??
Hope you're all doing well,
Stacy

THANK YOU STACY!!!
I thought that this diagnosing and treatment suggestion (by Wayne, in this case) was far OVER the top! Thank you for reminding him (and others) to not try and diagnose OR, especially, treat people based merely on what they have seen posted. As one of those who has gone through the more-than 30 surgeries, I can say that what has been posted of late is extremely disconcerting for me!
Like I have said in my shareposts, none of us are doctors; even if we were, we are not each others' doctors and we should not dain to provide this type of "support".
Again, Stacy; thank you for this reminder!
Anne

Hi Stacy. I'm having trouble finding the thread on hormones. Have you had a chance to start it yet?

I'm really interested in how hormones play a role in TMJ. I'm having some fertility problems and my dentist (yes, we even talked about this, for some reason it came up) said that my body has been in pain so long that my reproductive hormones may be thrown out of whack. I wonder if that could really be ...

Amy,

I sent you an email re: what I've gone thru w/ hormones etc... Hope it helps.

Tami