Read the Latest News

Funding Opportunities now available for the NIH Common Fund’s Acute to Chronic Pain Signatures program

The NIH Common Fund's Acute to Chronic Pain Signatures program aims to understand the biological characteristics underlying the transition from acute to chronic pain and what makes some people susceptible and others resilient to the development of chronic pain.

Opportunity to Voice Your Opinion: U.S. Government Officials Want To Hear from Patients with Pain

FDA Public Meeting on Patient-Focused Drug Development for Chronic Pain On July 9, 2018, FDA hosted a public meeting on Patient-Focused Drug Development for Chronic Pain.

Consider Including the TMJA in Your Financial Planning

We were recently contacted by Tom P. who informed us that he was including The TMJ Association (TMJA), in his financial planning. Tom wrote the following for us to share with our readers:

The Scoop on TMD Pharmaceuticals

Let's say the National Institutes of Health just handed us a multi-million dollar grant to get to the bottom of TMD and find a cure once and for all. I mean, we could start handing out heating pads left and right, but that kind of relief can only get us so far. Whenever I try a different form of therapy or medication, I like to think about the biology, right down to the cellular and molecular level. Why are the cells that make up my jaw region being such jerks?

Join Us AT TMJ Cafe

The TMJ Association is pleased to partner with Inspire to bring you the TMJ Cafe, a free online support network and discussion community for those with Temporomandibular Disorders (TMD). We invite you to meet others like you, share experiences and tips for getting through the day, and give and receive support.

Karen: My Long and Endless Journey

  • Jun 27, 2014

In 2007, I underwent arthroscopic surgery on my right joint to try and correct a dislocated disc and attempt to increase my range of motion which was about 15mm at the time.  The surgery went well and I was able to increase my jaw opening to 40mm, but the celebration was short lived as two days after the surgery my ROM decreased to about 15mm again.  Boy I can remember those two days of having 40mm and having the pain completely gone.  It felt like I was reborn and was even able to eat an apple which I hadn’t been able to do since before the jaw surgery in June of 2005.  It was like a blind person being able to see for the first time in years.

On September 17, 2007, I went to obtain a second opinion from a doctor who stated he had two concerns.  The first he was unable to accurately reproduce my bite and centric relation.  He felt this may be due to inflammatory changes in my temporomandibular joints and/or the jaw muscle dysfunction.  He felt it was imperative that a stable centric occlusion is established.  His next concern was my displaced temporomandibular joint discs.  He felt even though both of discs were displaced, he felt my right disc was in worse shape. 

On October 29, 2007, my doctor who performed the arthroscopic surgery wrote me a letter stating that it was unfortunate I suffered from face and jaw pain and severe limited mandibular movement which constantly interfered with my ability to talk, eat, or function my jaw in any other way.  He stated my dental occlusion shifts variably and unpredictably as a consequence of a further underlying disorder.  He further stated despite many months of nonsurgical therapy, including medication, occlusal orthodontics, soft food diet, surgical treatment including TMJ arthroscopy, steroid injections, and brisement, he had no further surgical care he could offer me.  He referred me to a world renowned surgeon to further treat my case.

In November of 2007, I traveled out of state to see a world renowned surgeon.  I was referred to him for TMJ pain, maxillary hypoplasia, mandibular hypoplasia, and decreased oropharyngeal airway.  His recommended treatment plan was as follow:

  • Bilateral TMJ disc repositioning with mitek anchor
  • Multiple maxillary osteotomies with bone/plate stabilization and hydroxyapatite grafting
  • Bilateral mandibular ramus osteotomies with bone screw stabilization

Unfortunately, my insurance company denied the jaw surgeries and only approved the mitek anchor surgery.  I went through three appeals with my insurance company to try and approve the surgeries.  I pleaded with them that my present range of motion was 12mm to 15mm and eating was very difficult. I had a relapsed jaw surgery, and my dental hygiene was suffering due to not being able to properly clean my teeth due to decreased ROM.  More importantly, I pleaded with them that I was facing a life-threatening situation due to my decreased airway at 4mm. (11mm is normal)  I also attended a Healthcare March in DC where my story was presented and a vigil was held on my behalf and many others who were facing insurance denials.  I also wrote to my senators and others pleading for insurance approval.

On May 20, 2008, I headed out of state knowing that I was only going to have half my surgery (mitek anchor surgery) due to insurance denial for the other half. I stayed two weeks recovering before returning home and took off of work an additional four weeks. 

After countless appeals, my insurance company finally approved the other half of my surgery thanks to new information re-evaluating dental models that it was evident I had a 4mm transverse dimension deficiency in my maxilla.  I headed back out of state and underwent a Lefort 4-piece jaw surgery and BSSO on October 30, 2008.  Again, I spent two weeks recovering before heading home and took off work an additional six weeks.

After this surgery, I never regained range of motion and my pain intensified again in my joints and jaws.  I also suffered intense headaches, neck pain, and fatigue.  I underwent physical therapy, manipulation procedures, and pain management.  After these all failed, my surgeon felt that maybe this was in my head and sent me to a hypnosis doctor.  The hypnosis doctor determined that my pain and decreased ROM was not in my head.

Shortly after this I underwent another MRI and the report came back that I was suffering from significant bone loss.  My surgeon stated he felt the MRI was okay and stated he felt I was suffering from muscle problems.  Not happy with this, my dentist demanded another radiologist opinion and the second opinion came back that I was suffering from significant bone loss from the mitek anchor surgery.  Finally after this, my surgeon agreed and then felt the next step was Bilateral Total Joint Replacement surgery using TMJ Concepts.

On October 20, 2009, I headed back out of state again to undergo bilateral total joint replacement surgery.  After two weeks recovery I stayed home for an additional eight weeks before heading back to work.

In November of 2009, I began experiencing severe stomach pain and swelling and went to see a plastic surgeon who confirmed I had a complication from the fat grafting area from the total joint surgery.  She drained the seroma and sent me back home.  Within days my stomach started swelling up again and I had extreme pain and went to the ER.  The hospital admitted me for two nights and stated I was dehydrated and put me on antibiotic IV.  After the seroma went down they sent me home.  After a few days home the seroma began to swell up again and a draining pump was inserted that I had to wear.  After two trips a week to the CVIR unit of the hospital for extreme pain, it was determined that I had to have emergency stomach surgery in January of 2010. 

After finally recovering from the stomach surgery, my range of motion actually increased to 43mm, but again this was short lived.  The joint pain returned with a vengeance along with the following symptoms: severe headaches, breathing problems, fatigue, neck pain, and decreased quality of life. 

My surgeon visited DC in May 2010 and felt that I was again suffering from a relapsed upper jaw from the second jaw surgery and ordered for the upper braces to be put back on after being off for only less than two months.  He felt that I was having more of an orthodontic issue than a joint issue.  My local doctors didn’t agree feeling I was having more of a total joint replacement failure and halted all my care until it is proven my joints are stabilized.    

My surgeon recommended a manipulation procedure under sedation and a hypersensitivity test to the metal of the prostheses at an Environmental Clinic.  Unfortunately, all my local surgeons stated they do not feel comfortable performing the manipulation procedure and stated they felt my surgeon was responsible for my care.  My surgeon just informed me yesterday that he is unable to perform the manipulation procedure in the dental clinic due to conflicts.

So today, here I sit with not knowing what to do.  All my local doctors have halted all care until it is proven that my joints are stabilized since my total joint surgeries.  TMJ Concepts stated they feel from CT scans all is okay, but can’t address my local doctors concerns that the plastic piece of the prostheses may be broken causing my lower jaw to shift to the right and my present range of motion at 7mm.  They stated they can only visualize the plastic piece of the prostheses since this does not show up on x-rays.  I am taking four different medications for pain including Valium and Lortab.  My quality of life is at zero, financial and family hardships have been endured, and now I have nowhere to turn. 

Is this where this journey has taken me, into hell?  Where do I turn now?  These answers just can’t be answered as it appears there are no proven answers when it comes to TMJ diagnosis and treatment.  If only I had known that millions of others have endured the same nightmare that I am experiencing.  I trusted my world renowned surgeon that I would have improvement following my total joint surgery and know I am in worse shape than before I had the surgeries.  I need at least seven crowns and two implants that are on hold until we find out the truth of what is really going on.  My braces have been on for almost eight years now with no hopes of being taken off anytime soon.