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Dentists in Distress

Fear of the dentist is practically a rite of passage in youth. Growing up, I wasn't exactly afraid of the dentist; rather, any excuse to leave school early was a powerful incentive. These days, I have a more complicated relationship with dentistry: I go to get answers and try to feel better, but I always pop a prophylactic ibuprofen or two in case my jaw protests from the oral gymnastics.

Patients in Los Angeles or New York City Needed for Clinical Study - Comparative Study of Women Considering or Currently Receiving Botox© Injections for TMJ Pain

Are you a woman with "TMJ" pain in facial muscles, who has either: a. recently had Botox© injections for your pain or b. not had Botox© for your pain but has thought about such treatment? If either is true for you, you may qualify for an observational research study centrally administered by the NYU College of Dentistry. It is funded by the National Institutes of Health (NIH). The purpose of this study is to understand potential health risks that may be caused by treating "TMJ pain" with Botox© injections.

Patients Front and Center at the 2018 TMJ Patient-Led RoundTable

It is still all too fresh in the minds of many patients. Fifty years ago, between the 1970s and 1980s, some 10,000 TMJ patients received Vitek jaw implant devices.

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. https://www.federalregister.gov/documents/2018/05/15/2018-10284/patient-focused-

Lori

  • Nov 2, 2016

Hi, my name is Lori and I am 55 years old. I've suffered from implant failures since the Vitek implant in the '80s. Since that time, I have gone through five complete implant reconstructions and at least 25 minor surgeries to replace screws, remove foreign body giant cell tumors and on and on and on. I finally was able to maintain a life when the Christensen implant was installed although life was still all about dealing with the chronic pain that drummed through my head daily. I was kept on a Fentanyl Patch for around 13 years just to get through each and every day.

On April 23, 2013, I went back into the operating room to have yet another screw replaced and came out with NO implant system at all and was told that the causes of my unrelenting pain were (1) the bone had regrown through the Christensen implant and into my skull and (2) another foreign cell tumor had grown into the masseter muscle, so a custom implant system was placed on June 11. I had 3-D MRI's, CT Scans and X-ray's taken; however, nothing was ever found like a bone growing through the implant into my skull. It absolutely makes me wonder just how much of that implant material has moved throughout my entire body.

I have been through so many pain clinics and emergency rooms because you can only tread water for so long before you start to bob in the water and reach out for a lifeline just to catch your breath for a few seconds of relief. Our emergency rooms are worthless because they think I am 'drug seeking'... rather than just take an x-ray of my face and you will see it's mostly metal.  I also believe they are gun-shy on giving meds because of the Drug Enforcement Administration. I'm not asking for a prescription for 50 Dilaudids; I'm asking to help me with my pain.  It is very real and VERY PAINFUL!!  I've had some doctors tell me that the first rule of medicine is "Do NO harm," to which I respond, "Doing nothing at all is doing more harm!"  I started going to dentists because my teeth needed cleaning. However since I've had so many surgeries, I wasn't able to open wide enough for them to get their instruments in so I was sent to several child dentists because they had smaller instruments. I've never been so embarrassed in my entire life and we won't even talk about being 'shamed' for having the teeth I had.  I've had dentists come right out and tell me that my dental habits were horrible and deplorable. In August of 2015, I finally had what few teeth I had left pulled and dentures fitted for $20,000!

There has to be a way to be able to sit down with dentists/physicians so they see a TMD patient as a real person and so they can be educated to see the problems of this disease. I don't believe any TMD sufferers want to be on meds every day for the rest of their lives. I despise more than anything that I am tied to my meds like a witch to a stake.

This is my photo...I don't smile much because half of my face doesn't work due to nerve damage. I get very SWOLLEN when my pain spikes, hence the rounded look. I am no different than so many others who suffer from this. I am tired of feeling like a monster and looking at myself in the mirror and hear my internal chatter say, "Who the heck is that I'm looking at?" It is what it is and it won't change for me.  My hope and prayer is that the work you are doing will educate physicians as well as educate and empower patients so they DON'T end up with 30+ surgeries and be deemed a drug seeker. I felt more like a science project than a person, and when things came out poorly, I was dropped like a bad habit.