TMJ

I think TMJ is involved in LD because it is a complicated joint. NO different that having, elbow, knee, neck problems, etc. I just wanted to say that I wore the appliance that you are speaking of for about two years. (two long years) and did not get much improvement and as you say VERY expensive. I think the appliance itself was around $2,000. I believe now that I had LD then but did not know it as I see alot of Lymies have TMJ issues.  D

Scorpio,

I have had TMJ for many years. I had jaw clicking and pain, periodic lock-ups, and terrible headaches that would rage up the side of my head and down my neck. Often this was accompanied by excruciating pain radiating across one side of my face. In the early 1990s my jaw locked shut (I could open my mouth less than 1/2"). I saw dentists, TMJ specialists, chiropractors, surgeons, and each had different advice for me. It was difficult to know who to listen to, so I followed the path of least resistance and listened to those that told me it would clear up on its own given time (and chiropractic adjustments). After a year of not being able to open my mouth I decided to get another opinion from a well-known (and expensive) TMJ specialist. His work-up indicated that I needed surgery. After surgery I spent months undergoing physical therapy. Ever since then, periodically, I've had to get back into physical therapy to help with the pain (myofacial, jaw, and head), but my jaw is much better than it used to be. I also have severe sleep apnea. I've been told that a jaw splint could help with the apnea, but my TMJ doctor and the physical therapist both advise against it because of the jaw joint problems I've had. Based on my experience and what I've been told by the doctors and other professionals I saw, I would just say that if you are contemplating a splint, be sure you're working with an experienced, credible specialist who understands your situation thoroughly. Be sure that you understand what the split is supposed to accomplish, and what problems it may cause. If all you need is a split to stop you from grinding your teeth, that's a pretty simple thing. But if the splint is meant to help with the TMJ, if it were me, I would not make price a primary consideration. It's too easy to mess up a joint, and the jaw joint gets a lot of use.


Good luck,

Rose

Rose,

What problems did you have with your splint? In my opinion, I'm no doctor, but I see more problems occuring if she doesn't have one made.

Thanks for all the replies. I'm going to re-read them all tomorrow when I'm hopefully feeling a little more clear headed. Yeah right....lol

Anyway, I went to the Gelb Center in NY. They are very experienced (AND VERY EXPENSIVE) TMJ and sleep specialists. Believe it or not I was quoted $2,950 for one splint and was told that I will need one for day, one for night and possibly something if I actually do have a sleep disorder. Unbelievable is an understatement! My insurance said it will cover 80% out of network for TMJ but even the assistant at the center said not to take for granted that they actually will reimburse the 80% because they often utilize their own guidelines and limits to pay less. Supposedly I will not know until after I pay for and submit the claim forms. Who the heck has this kind of money, especially when on disability and treating Lyme?

I don't suffer wtih what I believe are the typical TMJ issues such as face pain, jaw clicking, jaw locking or trouble chewing but then again what do I know. I do get earaches, lightheadedness, dizziness, cognitive issues, sinus inflammation (no nasal congestion) and fatigue. Nothing about me is typical anymore. Ugh!! My face has also become asymmetric the past year or so and seems to be getting worse. The facial thing is becoming very obvious and is really freaking me out the most.

One of the things I liked most about this doctor was what appeared to be his knowledge of TMJ in relation to immune problems. although I'm not too sure that's really important in the scheme of things since I'm being treated by a llmd for lyme and only need him to correct the TMJ issue.

If anyone knows of a good TMJ center or specialist in Manhattan where I can get a second opinion, please let me know. I know I have TMJ but can't spend $6,000+ to correct it. I'm pretty sure we can mention names here because it has nothing to do with the treatment of LD. After what I've been through, I'm not too comfortable choosing someone without a personal recommendation. I've been mislead before by doctors being named the "best" and "top".

Thanks again for all the information and taking the time to respond. I hate to sound so negative but it certainly never seems to end for us.

Hope everyone manages to enjoy the rest of the weekend.

I think the chiropractor specialist is a good idea. I now have a wonderful chiropractor who is helping with my neck, face, and jaw pain. Before my surgery my face was asymetrical too. It was explained to me that the cause was my use of more muscles on one side than the other, compensatory to the weakened joint. The disfigurement dissipated slowly after surgery. That is encouraging because I take it to mean that the joints on either side of my jaw are now working together. CG, I do not have a jaw splint. Grinding has never been a significant problem for me, so I didn't need one for that. I did not mean to suggest that someone who needs such a splint should not get it, I just think if you have jaw joint problems that may not spring entirely from grinding your teeth it is important to understand how a splint could impact your joints. I could be a candidate for a splint to alleviate the sleep apnea, but those splints pull the lower jaw forward to create a larger airway. My TMJ doctor advised against wearing someting that puts my jaw in an unnatural position because it could be detrimental to my joints. I am sure that is not true for people who do not have a history of jaw problems. When I priced a jaw splint it was $2,400. The kind I looked at was adjustable. That way if my situation changed, or if one position did not work, I would have the option of having it adjusted until a comfortable position was found. That seemed like a good idea to me. Scorpio, did your doctor explain what the purpose was of having daytime and nighttime splints?

My daughter also has TMJ. She has decided to undergo jaw reconstruction. If I were younger, I'd do that too. She grinds and currently wears a drug store splint for that. The splint does not resolve the pain, clicking, or jaw-strength issue. To realign her jaw, she will either have surgery or wear an experimental internal jaw splint that will slowly reposition her bite. During and after that process she will have braces to move her teeth so that they line up with the new jaw position. The whole thing will cost her in excess of $10,000, but after watching me struggle for her whole lifetime, she decided to do it.
about insurance - in my experience TMJ claims can fall into a no-man's-land between medical and dental insurance leaving the patient to pay it all. I'd be very careful to know every step of the way how the claims are being submitted to insurance. Unless you have fantastic dental insurance, it is very limited. If there is any leeway in diagnosis code designation, I've found it's best to have it qualify for my medical insurance.

I never heard of any correlation between TMJ and immune problems, and until reading posts on this site, between TMJ and Lyme. I think my TMJ started after I wore a night brace with neck strap as a child as part of orthodontic treatment. That is when my jaw started clicking and locking up. I'd be interested to learn more about these other causes.

Rose

Jenn - I wonder if that is happening to you because of Lyme inflammation in your joints. I also wonder, based on what you say and also on my own experience with the chiropractor, if the reason we have difficulty holding an adjustment is because of joint swelling caused by Lyme. I see my chiropractor weekly, too. That seems to be what it takes to keep my pain at bay.

Rose

Scorpio,

The place you are going sounds like a place I would like. It's wonderful that they take the time to explain things to you. I hope when you find out about the day guard/night guard issue, and also what they'll do you will share that information. I'd like to pass it along to my daughter. She hasn't put anything in motion yet, and the more she knows, the better able she will be to make a good decision. Good luck with your appointment.

Rose

I have TMJ and I am using a night gaurd- actually it is becoming more of an "anytime" guard. It seems now that i wear it more i do not have as many jaw problems. I have noticed gradual improvement over the past month.

Three? what's the third one for? LOL. yes, they do try to make their money don't they? I really think the more you wear it though the more you will be aware if it is working or not working for you. My dentist told me to let them know right away if it wasn't so we could try something else. So far so good.

You're the first to comment on my signature :) I kept trying to think of good quotes like everyone else and got frustrated! LOL so that just seemed to fit my mood.

finding721, So far I was told about one night-time guard and one day-time guard for the TMJ and I believe there's another appliance for the sleep disorder. Now that I'm writing this out I can't imagine how I could wear two different guards at night although I'm sure they will push to get me to buy all three. lol I'll get it all clarified next week after the sleep study. The hard sell I was given for the guards was the only thing that put me off about the center. I'm wondering if the girl trying to get me to commit gets a commission.

CG, I love your blog and am once again impressed by all you do. Thanks.

thePlum13, Thanks for all the great advice. Do you believe TMJ can cause sinus inflammation too?

With any luck I'll find out that I'm covered and will be able to go forward with the Cadillac of treatment. lol I guess I'll start with whatever they suggest as far as the night guard and if my coverage does really reimburse me 80%, then I'll go for the whole shebang. LOL

The center also offers chiro and acupuncture but I'm not well enough right now to get anywhere on a regular basis anyway. When I am, I plan on taking your advice and am going to try the chiro cmacaran suggested.


Thanks for all the responses and info. I'm now confident that I'm at least headed in the right direction.

Lots of good information here. thePlum13, craniosacral therapy is what I get periodically when I have TMJ issues. It is very gentle and soothing. Part of the therapy was training me how to hold my mouth and tongue so that they don't cause tension. I also have exercises to do at home that help relax muscles. I've never tried accupuncture, though it sounds like an interesting possibility. I was aware that I could get sinus pain as part of the TMJ inflammation, but not that it could also cause sinus congestion. Not sure how to address that beyond eliminating gluten and milk products (already done).

Rose