As the mother of a 26-year-old daughter with end-stage TMJ, I hope that our experiences and input may help to bring about much needed change in the diagnosis and treatment for those suffering with TMJ. My daughter’s problems began soon after wisdom tooth extraction and slowly progressed. By the age of 20, in her second year of college, TMJ pain had reared its ugly head with a vengeance and impacted her once “normal” life. The pain affected her ability to focus in school and started to impact her ability to function day to day. Approaching her 21st birthday, she started to significantly lose function of her jaw. Her facial muscles became incredibly tight, her mouth opening began to shrink, her ability to chew diminished day by day and her pain was “off the charts”. She became nutritionally compromised as well, and began to lose weight. Pain, despair, and anxiety were now a part of her everyday life. In her fourth year of college, majoring in Nursing, she was forced to take a medical leave of absence in an attempt to manage her pain and identify the root cause of this agony.
Through the years, we sought out the “best” dentists, doctors, and surgeons in the Boston area, and even traveled across the country to consult with doctors in search of answers. In all, we consulted and/or treated with 15 dentists and/or oral surgeons. We have also seen a minimum of 30 other medical professionals, seeking answers and/or relief from complications and pain associated with TMJ. On the advice of oral and/or maxillofacial surgeons, she had arthrocentesis, steroid injections, Botox injections, and arthroscopy.
Diagnosis of TMJ, severe bone degeneration, bilaterally displaced discs, and increased inflammation were given, but no explanations as to cause. Six months later, after a Cone Beam Cat Scan (CBCT) and a Bone Scan, we received devastating news; her bilateral condyles were “largely destroyed”. She was now considered a candidate for bilateral Total Joint Replacement (TJR) at 21 years old.
As a registered nurse, I was shocked and appalled when we began our journey consulting “medical professionals” (dentists, oral surgeons, rheumatologists, physical therapists, chiropractors, etc.). There was lack of knowledge and understanding, lack of standards of care, mixed diagnosis, conflicting treatments options, etc. There was very little (if any) collaboration with other healthcare professionals, poor communication, poor intake history, rarely a THOROUGH work up to assess patients for other contributing factors (ie; Lyme Disease, other bacterial infections, viral infections, parasitic infections, EDS, autoimmune issues etc.).
Unfortunately, this story rings true to so many who suffer with TMJ that I have met across the country. Investing in much needed changes and how we treat TMJ will ultimately change the outcomes of these patients. We need clearly defined, standards of care for TMJ diagnosis and treatment, as well as changes made in how we assess, treat, and follow both pre- and post-surgical patients.
Many patients here and around the world are lost, forgotten, and suffering. I cannot imagine that all of us here don’t share the hope that someday the approach to TMJ will be drastically different from what we have experienced, and continue to experience today. We are in dire need of a multidisciplinary approach to assessment and treatment of TMJ. The main goal is to assure the best possible outcome for the patient. We must assure that those requiring surgery will not suffer the same devastation and loss that they currently do today.
Michelle
Background: Registered Nurse and Patient Advocate
Michelle, your daughters story sounds very familiar to mine. I am 28 and have almost no function remaining. Sadly no medical professionals will even let me in the door, nevermind help. It’s comforting to know I’m not alone. It’s a tough thing to deal with as a young woman and so much life ahead
I have had several splints some of which worked fine. I have lost three teeth recently and I can’t afford to get implants or a bridge. I can’t wear my splint now because I don’t have enough teeth to hold it in place so I will just have to have pain from my TMD.
Hi I am a 26 year old female. Currently facing symptoms that your daughter faced. I am having very tight muscles , my mouth barley opens it got better but now worse again. I just did Botox and was taking muscle relaxants. If I could connect with you or your daughter that would be amazing.
hello, my name is George, i am a 76 year old man, i have not many teeth left now, as you will be aware at my age we were not a rich family, i have left it too late now to make a difference in my mouth care, today i am going to the dental school at newcastle today to have some work done, “it is all free” i have been going to this place for several years now, i am going today for more treatment, there may be other free places so search for these facility in your county,
best of luck, you may have a better place than me for parking, as the one at Newcastle is always full, there are places on the main road but they get filled very quickly, good luck from gorgeous George Newton Aycliffe Co. Durham.
Hi, I am a 70-year-old female. My TMJ started when I was in my mid 20’s. I have had 7 jaw surgeries. My first surgery was in 1983 and the last one was in 1995. I was the recipient of Vitek, Inc.’s jaw implants that had proplast/Teflon in them and they ruined my face and caused me unbelievable horrific pain that has lasted for the past 50 years. I used to see an Oral Surgeon at Baylor in Houston, but he ended up ruining my teeth even more. I understand how TMJ has ruined my life and the effects on my family. I currently have a Pain Management doctor that prescribes strong pain medication, and my neurologist prescribes pain medication for my migraine headaches. If I had any idea what the Vitek implants would cause me, I would have never had the surgeries. The oral surgeons that I saw in the 1980’s lied to me and they knew the real truth and that was that Vitek implants were not safe and would cause a huge amount of pain and other problems. The last jaw surgery that I had in 1995 was in Dallas, TX and Larry Wolford, Oral Surgeon put in his own implant. let me back up, in 1991, I had the Vitek implants explanted and the Christensen implant put in. The FDA wanted my Vitek implants and I gave them my permission to have them when they were removed at the hospital. I had contacted the FDA in Houston, TX and asked them if they wanted my Vitek implants and they did. They came to my home and I had to sign multiple papers giving them permission to have them. They then sent my implants to Washington, D.C. to the Department of Defense and Dr. Donald Sweet (in the Orthopedic Department) analyzed and did research on the implants. It took one year for me to get the report that he had made about the Vitek jaw implants and the report was shocking. The materials in these were dangerous to a person in more than one way. They were dangerous to a person in multiple ways. My report is in my attic along with my TMJ reports that I had given to an attorney in Beaumont, TX. He had about 200 or more patients that had filed a Class Action lawsuit against Vitek. My best friend, Beth, had filed a complaint with them too. In 1992, Beth committed suicide in her home. I couldn’t believe that she did that, but she did. She had suffered like I had and all the other patients in the lawsuit. During all of the years that I was dealing with TMJ jaw surgeries, my pain level was off the charts. The strongest pain medication that I ever had was fioricet with codeine. When Dr. Wolford did my last surgery in Dallas, he prescribed morphine for a while and then after a particular length of time, he stopped. All of my jaw surgeries were bilateral. They cut you by your ears and under each side of the neck. It was so painful and after having surgery I would be black and blue and my face would be swollen. They would wrap my head and jaw with ice packs in the hospital.
My advice to anybody that is told that they need to have jaw replacement is “no, and NO”. You had better do your homework and know what these doctors are talking about and what implants they are considering using before you let them do surgery on you. I understand that currently, the oral surgeons have a different way of doing total jaw implants now. Hopefully, they are much better and safer. Good luck to all of you TMJ patients. Connie
I am a 21 year old male and I began facing some serious TMJ problems about 2 years ago. For about a year, my jaw was locked in a closed position. I have been trying to get the problem fixed by a TMJ specialist which hasn’t really helped. At first, my jaw unlocked and the problems and pain began to subside. Now 3 months into this VERY expensive “treatment”, my jaw will no longer close properly and the pain of opening still persists. The number of doctors and “specialists” I’ve visited have exceeded 10. I’m surprised how little is known about the condition and am disappointment that because of the lack of knowledge, it causes treatment to be uncovered by any insurance. I hope to be able to use my jaw again one day.,
I am in tears reading this. While in pain. This story sounds exactly like mine. After my wisdom tooth extraction this started to happen especially to my left side. It’s ruined me since I was 26. Im 31 now and still suffering. I’ve been to many different doctors have had multiple MRIS and all with no answers or solutions. 1 “specialist” even dropped me as a patient and told me there’s nothing wrong and he can’t help me… I am so lost and I cannot take this pain anymore. It’s effected my career and personal life. I don’t know what to do. I cannot believe how similar your story is and how much I can relate. I would do anything for answers.