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It's Time to Be Part of the Solution

The National Academy of Medicine (NAM) Study on Temporomandibular Disorders (TMD) is well underway. We strongly encourage everyone affected by TMD to write to the NAM committee letting them know what it is like to live with TMD and your experiences with getting care.

New CME on Chronic Overlapping Pain Conditions

The Chronic Pain Research Alliance, an initiative of The TMJ Association, in partnership with the International Pelvic Pain Society, is pleased to announce the release of our newly developed Continuing Medical Education (CME) program on Chronic Overlapping Pain Conditions.

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.

Karen's Story

  • May 13, 2015

At age 48, permanently disabled and having suffered 45 years of endless medical illnesses from the age of 3, with 67 total surgeries, 35 of them related to the TMJ alone, one wonders what keeps my will to live... of course my loving family, but my dogs are the center of my life! It is as if I am living in two different worlds or alternate realities; one is a nightmare of relentless pain, and the other is pure compassion with a different species.

I was diagnosed with ulcerative colitis at age 3. By age 10 I had to have an ileostomy with the removal of my colon and rectum to save my life. That seemed like a walk in the park compared to what I experienced later - 33 years of TMJ pain that started in high school.

As an honor student in Chiropractic School, just nine months from graduation, I found out first, that the TMJ surgery I had, putting in the bilateral Vitek VK-II Teflon/Proplast Total Joint Prosthesis occurred AFTER the 1989 FDA recall, and that the four Dow Corning Silastic TMJ IPI implants I had earlier were the cause of my continued health problems. The Teflon and silicone wear debris particles from the broken implants poisoned my immune system and caused seizures - cognitive deficits that affect my thinking, memory, and communicative skills. The resultant Chronic Inflammatory Polyneuropathy, a demyelinating disease similar to Multiple Sclerosis, causes general fatigue, malaise and muscle aches/pains on a daily basis.

I have had multiple TMJ surgeries, including using my ribs and titanium total joints to repair the damage done by the recalled implants, so that now the bone is so deteriorated that there is not much else the surgeons can do. I take countless medications for the conditions mentioned above, including needing IVIG treatments every three weeks for life to boost my immune system and morphine at the maximum allowed dosage for the relentless pain.

I was engaged to be married but he couldn’t cope with my medical woes, and thus I lived with my retired parents for years until they couldn’t take care of me anymore.  Now I live with one of my brothers and his wife.  I collect social security’s supplemental security income with no opportunity of marriage in sight and no chance of having kids, since a hysterectomy at age 27 from endometriosis has spoiled that. I had several surgeries to fix a hernia from when a surgeon put in a synthetic mesh I was allergic to against my signed consent. My life seemed very bleak, burdened by insurance denials and medical malice. But, that has changed!

This life of doom and despair has given me the opportunity to experience the wonderful gift that animals have on the human psyche. Due to my seizures, I obtained my first seizure-alert response dog in 2000, a German shepherd named Amando. His companionship and training led me out of the house to experience life again, but life in the world of K9’s.

Since childhood we had shelties and mine had just passed away, so I got a sheltie puppy named Sakima and started obedience training and was introduced to the new sport of agility. I showed him successfully in obedience and agility trials until he passed on, and then got Duncan who belongs to my parents.  I trained him to be very successful in agility as well, until they moved to Texas and took him along. Then, Amando got fatally ill while I was fundraising to get Woody, a German shepherd dog from the Border Patrol Program in the Czech Republic, preparing him to become my replacement service dog for that inevitable day when Amando would die. That day came five days after Woody’s arrival. With NO seizure training at all, Woody saved my life - preventing my fall by standing under me.  He has been my faithful companion ever since.

Since Duncan belonged to my parents, I wanted a sheltie of my own, so I got Chaos in 2004, and I have to say, that Chaos has immensely impacted my life so much that I’m a completely different person. She was shy and more dependent than the other dogs which gave me the opportunity to provide more “mothering” to her upbringing. Through the rigors of training and showing at trials in agility, Chaos has changed the quality of my life. Whereas I used to dwell on the past medical problems, I’m now more self confident and way more active despite my ongoing medical conditions. I have traveled to many places, met a supportive community of people, and been on national TV twice on the Purina Incredible Dog Challenge.  Chaos has won a MACH championship AKC title in agility, is working on her second, and has placed 2nd in the 2010 and 2011 Sheltie Agility Nationals.

Chaos and Woody are my soul mates. They understand when I don’t feel well, each in their own individual ways. They provide me with comfort and confidence and make my life more enjoyable and happy. I laugh way more than I ever used to, and best of all, I have met so many different and interesting people who have opened my life to sharing with others and show the world that despite my medical mishaps, I do have an ability to live - through animals. Unfortunately, my own future in agility is in jeopardy due to complications from long-term prednisone therapy that I had as a child, which has caused degenerative joint disease in my hip and ankle, probably requiring yet more total joint surgeries.

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In Treating TMJ

To view or order a free booklet about TMJ Disorders, visit the National Institutes of Health website.

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