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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.

Debbie's Story

  • May 13, 2015

I have been a diagnosed TMJ sufferer for more than 26 years. My story is a rather lengthy one.  But the short version is that I still have pain and now I have severe nerve damage.  I always tried to do the least invasive treatments and they seemed to work but only for a short while.  So, in the past 11 years I have had four surgeries to my jaw.

The first to just the left side in 2000 was to repair a dislocated and torn disc. I was pretty much pain free for five years when the “warranty” ran out. 

In 2005 I had the same surgery to the same side of my jaw by the same surgeon. This time I was never pain free and my surgeon refused to hear that I was in the same amount of pain after the surgery as before.  Due to the ailing health of my Mother and her death in 2006, I had to put my pain aside and take of her and my Dad and younger sister. 

In 2007 I had yet another surgery, this time a bilateral procedure that lasted five hours. Again, both discs were dislocated and both discs had significant holes in them. I was bone on bone and really had no choice but to have yet another arthroplasty.  This time my entire left side was completely swollen and I was transported by ambulance from the outpatient facility to the main hospital and had a three day stay courtesy of my jaw surgery.

Now the nightmare of numerous tests begins as everyone believes I’ve suffered a stroke because of the swelling and weakness on just my left side.  Turns out that’s not the problem at all; however, I wasn’t told that for many months to come namely about 18 months of trips to the emergency room and several days in the hospital under observation. 

I regularly saw a neurologist who never told me of my condition and repeatedly said I had Bells Palsy and that the nerves were regenerating and I was doing just fine.  Funny though, I never felt fine!  I complained always of the same thing; I have a burning pain in my left side of my face, my lower lip tingles and I still can’t raise my eyebrow on the left side so my smile is crooked.  But, I was doing just fine!  I regularly checked my symptoms on the internet and repeatedly came up with same diagnosis…what a wonderful invention the internet is…my internet diagnosis is Trigeminal Neuralgia! 

I’ve recently found a new neurologist and he’s now trying to get my nerve pain under control. Unfortunately for me I don’t respond well to medications and get the least known side effects that manifest quickly and to a great extent.  The new neurologist has said that not only do I have the 5th cranial nerve damaged which is for the Trigeminal Neuralgia I also have the 7th facial nerve damaged.  Lucky me, but my jaw is fixed and I can open and eat when I don’t have significant nerve pain. 

What a life we TMJ sufferers live. I’ll never eat a hamburger the way most people do (I cut mine up and rarely eat the bread) and I’ll never eat a slice of pizza by merely putting it my mouth and taking a bite and pulling it out of my mouth ( I cut mine up on a plate)…makes for a wonderful diet.  I’ve even been told I have such “dainty” eating habits little do people realize I would just like to eat like everyone else.

So, I just really wanted to share a small portion of my story and ask if anyone else has the same complications as I’ve had after repeated surgeries or has no one had as many arthroplasties as I’ve had? And, I’d like to know what treatments others are being prescribed for this same condition.  If there is no one, perhaps one of the many experts who are associated with the TMJ Association would be willing to discuss this with me.

My sincerest wishes for a Happy New Year to all TMJ sufferers and those who support this terrible disease.

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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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