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And the Committee heard from the American Association of Oral and Maxillofacial Surgeons

At the end of the NAM meeting, Dr. Gregory Ness, representing the American Association of Oral and Maxillofacial Surgeons (AAMOS) gave the following comments: “AAMOS welcomes the interest and support of the Academies, the NIH, NIDCR, FDA and The

What Allen Told the Committee

Allen Cowley addressed the second open-to-the-public meeting of the National Institute of Medicine's (NAM) Committee on Temporomandibular Disorders (TMD) held on March 28, 2019 in Washington, DC. No stranger to the world of TMD, Dr. Cowley is the hus

Some Thoughts on Depression

It is hardly surprising that the chronic pain and limitations in function that many long-time TMJ patients experience can be accompanied by a state of depression, a sense of exhaustion and hopelessness.

Upcoming NAM Public Webinars on TMD

The National Academy of Medicine's (NAM) Committee on Temporomandibular Disorders (TMD): From Research Discoveries to Clinical Treatment is hosting two public web conferences on Wednesday, June 19 and Wednesday, July 31.   Webinar 1: Pati

The NAM Committee Heard from Patients, Too

At the March 28, 2019 public meeting NAM committee members had a chance to hear from TMD patients who had submitted testimony for the record.

Lori

  • Feb 8, 2019

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.