Metal Mouth Message Board

My situation began with an upper splint by dentist #1 that forced my jaw back when it should have been brought forward. This caused significant rotational orthopedic issues. Dentist #2 attempted to correct the situation with a lower device and this caused visible cranial & orthopedic torsion. After considerable effort it was discovered that I have weak connective tissue & I'm assuming this is why everything goes haywire with these dentists. At present both dental arches are in collapse and I have cranio/cervical/pelvic instability. I need to stabilize these teeth somehow but am very hesitant about moving forward with another dentist. I have a narrow underdeveloped jaw & I've been researching ALF but just don't know if this would be an option for me. I've recently had good luck with an osteopath & myofunctional therapy as it de-rotated me. My doc feels that I would improve with further dental stabilization. Does anyone have this level of instabilty? I'm terrified to work with another dentist.

I think it really will depend on the training of the dentist/orthodontist you choose.

I have some joint hypermobility. As I've gotten older, I seem to be having more problems with this. I have been diagnosed with tmjd. My symptoms presented as ear problems though so I didn't realize how much damage had been done before I realized how severe things had gotten. I did know I had bruxism issues and wore a lab made flat plane occlusal splint at night for 7 years, as recommended by my dentist.

When I figured out there was a problem and found a well trained dentist/orthodontist, I also learned that the splint that I thought was helping had actually resulted in my lower jaw being out of place. I also had some surgery several months prior to my diagnosis and my dentist thinks with my hypermobility the intubation probably exasperated the tmjd. In my case, the lower jaw was pushed back into my ear.

The ALF may be something to consider. My orthodontist recommended it as part of my treatment. I couldn't afford it and the splint therapy I needed at the time though so I never tried it. Therapy with a lower mandibular repositioning splint did help with my bite. With everything out of whack, my muscles had been in spasm so long that I hadn't even realized it. With the splint and supportive theraputic treatments, I was able to get the muscles out of spasm. This helped with the other symptoms.

My tmj orthodontist recommended supported therapy by: physical therapy, cranio-sacral therapy, chiropractic therapy, naturopathic medical support, massage, etc.... He is a holistic dentist who looks at treating the dental issues in conjunction with the rest of the body to achieve balance. I couldn't afford all of the avenues I'd love to try, but have found physical therapy whith trigger point releases, neck work, and body alignment to be extremely helpful.

There is a book that was published a couple years ago that I found to be extremely helpful. If I'd had it earlier on, it could have saved me a lot of money as I tried to figure things out. It is called The TMJ Healing Plan: 10 steps to relieving headaches, neck pain and jaw disorders, by Cynthia Peterson, PT. You might find it extremely helpful. She does talk about hypermobility issues in the book and her facebook as well.

I'm actually in braces now to help me re-establish a 'new' bite. I started with them as Phase II of my treatment about a year after I started in with the other treatments. So far, I've had good success with my self-ligating braces. My upper arch has developed significantly and was 'done' in about a year.

I know I will always be in treatment of one kind or another because of the hypermobility. At least I know how to monitor myself to know when I need to step up treatments. Right now, I'm in PT for neck and shoulder issues. It does help significantly. Watching my posture is hard. With tmjd, it is easy to develop the 'head forward' posture and hard to 'undo' it.

Do you have problems with other joints? Even with more minor hypermobility/instability, I have. Mine started with my shoulder. Since 2008, I've had surgery on it, 2 surgeries on my wrist, treatment on my foot, and tmj joints. I've also been diagnosed with excessive laxity in my hand as well. Other than a minor injury to my wrist that wouldn't heal right because of the instability, I haven't actually had injuries to any of the areas. My problems just seem to gradually sneak up on me because of the instability.

Hi Jill, Thanks for your post & suggestions. I know there are few ALF practitioners & everything depends on the skill of your providers. With my unique structural issues I've found the most highly skilled are left confused. It's great you were able to find a progressive team to help you.

I'm very apprehensive of occlusal splints since I've had disastrous results with 2 of them. However with that said I did wear a 3rd one very briefly it actually helped stabilize my entire body. It was simply a flat plane splint that pulled the jaw forward ever so slightly. My PT's were amazed that they were actually able to "hold" my adjustments.

Also, have you ever considered the possibly you have a connective tissue disorder? Even though I don't have the usual presentation of joint subluxations I was recently diagnosed by a geneticist with a hereditary connective tissue disorder i.e., the collagen or glue that holds me together is faulty. I've had a complicated medical history but it never occurred to me that I had one big underlying issue. I also have a forward head posture from trying to breathe with a retruded mandible.

I'm still in the process of getting to the bottom of this entire "situation." My doc feels possibly my dental instability is a result of cervical spine/cranial instability & has referred me to a neurosurgeon for an evaluation. I'm working on doing this.

You can see with all of this instability I would be hesitant to move forward with ALF. I need to gather the facts & complete my workups before I'll be able to make an informed decision. Possibly in my case less is more.

Are you working with a neruo DDS?

Hi Jill, I had an afterthought. You commented that you experienced TMJ. I'll experience facial muscle spams following discontinuation of a dental orthotic but it always seems to resolve. Since I no longer have an occlusion to speak of I have visible facial distortion since I don't presently have balance or proper support. As a cosmetic surgeon would say "the teeth are the foundation for the face" and this is very true. But the TMJ is not the issue as much as the collapse going on everywhere else. So, I'm not the typical TMJ patient either. DDS's tend to focus more on TMJ & not orthopedic instability.

lily101 wrote:Hi Jill, Thanks for your post & suggestions. I know there are few ALF practitioners & everything depends on the skill of your providers. With my unique structural issues I've found the most highly skilled are left confused. It's great you were able to find a progressive team to help you.

I'm very apprehensive of occlusal splints since I've had disastrous results with 2 of them. However with that said I did wear a 3rd one very briefly it actually helped stabilize my entire body. It was simply a flat plane splint that pulled the jaw forward ever so slightly. My PT's were amazed that they were actually able to "hold" my adjustments.

Also, have you ever considered the possibly you have a connective tissue disorder? Even though I don't have the usual presentation of joint subluxations I was recently diagnosed by a geneticist with a hereditary connective tissue disorder i.e., the collagen or glue that holds me together is faulty. I've had a complicated medical history but it never occurred to me that I had one big underlying issue. I also have a forward head posture from trying to breathe with a retruded mandible.

I'm still in the process of getting to the bottom of this entire "situation." My doc feels possibly my dental instability is a result of cervical spine/cranial instability & has referred me to a neurosurgeon for an evaluation. I'm working on doing this.

You can see with all of this instability I would be hesitant to move forward with ALF. I need to gather the facts & complete my workups before I'll be able to make an informed decision. Possibly in my case less is more.

Are you working with a neruo DDS?

Based on the hypermobility and another health issue I have, I pretty much assume that I do have a connective tissue disorder. I end up getting treated by each specialist individually as the issues arise. I've considered seeing if insurance would consider genetic testing, but I'm not sure even if it came back positive that my treatments would be much different. I'm not sure who I would see for the testing either.

A large number of people with tmjd have issues with neck forward positioning. I've found it throws off the posture and body alignment quite significantly at times. That is why supportive therapy and treatments are so important. That book I recommended before has a significant amount of information on this topic.

I think it is great that you are seeking out a variety of opinions before deciding on a course of action. In the end, I found I needed a multi-prong approach to treatment and not just one single person. In getting my diagnosis, I saw my PCP, ENT, several dentists/orthodontists/tmj specialists, Audiologists, Pulmonologist, and a Neurologist. The presentation of some tmjd symptoms can be complex and not easily attributed to just tmjd so it was important to look at everything and rule out what it wasn't in order to hone in on what the problem really was. In addition to tmjd, I also had the diagnosis of myofascial pain and cervicalgia. I also had a chiropractor and specially trained PT to my team for treatment as well.

I had a neuromuscular dentist on my list for consult, but loved the approach and training and treatment plan of my current dentist so much that I chose to begin treatment with him.

lily101 wrote:DDS's tend to focus more on TMJ & not orthopedic instability.

I agree. That is why I was so excited when I finally found a specialist trained to address the root issues as well as the obvious ones.

It sounds like you were able to form a great cohesive team. How did you ever find them? Do you have to travel? I seem to be having trouble finding my footing in this regard. I've had 2 teams such as yours in the past but there was a lack of communication with both of them. There are so few DDS's who work at this high level.

Most people like us have forward head postures & present with one shoulder up & one down & usually present with impingement on C5 disc.

I've been working with an osteopathic doc who is terrific & she referred me to a DDS. He works with various PT's but once again I have hesitation concerning his treatment plan. He's suggested starting with 2 dental orthotics, one day & one night. This will help in stabilizing the jaw. It seems like this would produce too much back & forth movement for my unstable situation. I would feel much better with one device, if any at all. Another DDS I've spoken with wants to move straight into ALF. How did your treatment plan begin? I should also mention that I have a cross bite and both dental arches are collapsing. What led you to seek treatment?

Concerning the geneticist. My osteopath felt I presented as someone with Ehlers-Danlos Syndrome. I met with a geneticist who specializes exclusively in connective tissue disorders but since I don't have joint issues I was not diagnosed specifically with EDS. There are vascular forms of EDS that affect the heart valves & you would need to be monitored in this case. My testing was covered at 100% by my insurance company. A medical report from your PCP suspecting a connective tissue disorder is all you would need to get in. Another thing to consider is possible discrimination in the future due to a positive diagnosis.

Sorry, another afterthought. How closely do you work with your DDS & PT's? Do they communicate with each other concerning your progress. Do they speak with each other following all of your adjustments? How are they kept on the same page.....

I have a history of dental problems related to my underlying EDS ( I have been housebound 4 yrs ) thats made it impossible to tolerate electric toothbrushes amongst many other things ( practically anything that vibrates ) .

Is any one here aware of any tests available that can help link CCI involvement ( or CSI as it sometimes known ) through dental occlusions ?

I cant open my jaw at all just at all you see, and amactually bit worried because I have had to resort to sipping through my teeth the last 4 days.

You can see how bad it is for yourself below
http://media.joomeo.com/large/525f2a268e64d.jpg]

( my mouth fully opened )

thanks,

barneyb