An Opportunity to Make a Difference

An Opportunity to Make a Difference

In March of 2019, I, along with approximately 10 others, were given the opportunity to speak in front of a panel of dentists, doctors, and surgeons in Washington DC.  Each of us was given two minutes to talk.  I called in remotely from my classroom in Florida.  Luckily, the time slot given was during my planning.  Here is a copy of my actual speech:

Hi, I’m Minda Phinney. I’m speaking to you remotely from my high school classroom where I’m an English teacher in south Florida.  I’ve suffered with TMD since I had my tonsils removed at 16. I'm about to turn 40. My jaw was dislocated and locked shut during surgery and didn’t resume its function until several months later with medical intervention. Both the dislocation and the barbaric methods used in attempting to pry my mouth open is where my TMJ nightmare began.  At that point, irreversible damage had occurred.  Through the years my TMD became worse: increased migraines, special diets, pain when I breath, pain when I walk, my opening was at 15 on a good day, muscle spasms,etc.  unfortunately, most professionals don’t know how to deal with a dysfunctional temporal mandibular joint. They don’t understand the debilitating pain it causes. Prior to going the surgical route, I tried conservative methods: splints, braces (for a second time), muscle relaxers, etc.   After the more traditional methods, I had 5 bilateral TMJ surgeries, some of which were unnecessary and caused irreversible damage, but I didn’t know it at the time.  My last surgery was bilateral TJR/orthographic surgery.  Dealing with insurance companies is infuriating and miserable.  They look at jaw procedures as cosmetic surgery. I assure you. It is not.  This, along with my nickel allergy, and waiting for FDA approval bolstered my depression and anxiety.  At one point I felt as though my life was spiraling out of control. 

Most people, including dentist, doctors, insurance companies, etc  lack empathy towards TMD sufferers. For example, I teach English and next year want to teach something different so I don’t have to lecture as much. I studied and passed the new certification test.  I was told I’m too valuable as a teacher to switch positions; hence, my principal doesn’t value my health because she doesn’t understand how a jaw works, the health issues it causes, and the pain I’m in. Unfortunately, this kind of reaction is not uncommon, and this is not the first time I was treated in this manner. As a society, we need more tmd awareness and understanding.  We must find a way to educate doctors, insurance companies, and society as a whole about this debilitating disease. As a TMJ community, we need to find was to inundate the public with correct information about this topic.  Knowledge and understanding is key to creating change and empathy. I’m literally the face of TMJ, but what people fail to understand is I fake normalcy every single day. I fake being alright. But in reality, almost everyone in the room that I’m speaking to and everyone who has called in is the face of TMJ because we all have this disease in common.  We are among the few that truly gets it.  Hopefully this will change. Hopefully together we can create change. Thank you for listening.

This was the response I got a few days later: 

Good afternoon Minda,

Thank you so much for sharing your experiences with TMD over the years. We’re sorry for the pain you’ve endured, but appreciate your willingness to speak about it. With your permission, we’d like to include your comment our project’s public access file and share it with the committee. The committee’s report will be released in Spring 2020 and we look forward to alerting you when the report comes out.

Thanks again,

TMD Study Staff

____________________

Senior Program Assistant

Health and Medicine Division | Find us at nationalacademies.org/HMD

The National Academies of Sciences, Engineering, and Medicine

500 Fifth Street, NW

Washington, DC 20001

Phone: 202.334.3129

TMJ the Invisible Illness

Not all disabilities are visible, and it’s difficult for people to empathize with someone who may “appear” normal.

The dictionary definition of the word disability is “a physical or mental condition that limits a person’s movements, senses, or activities.”

I appear normal.  I credit my fabulous surgeon with the fact that unless a person looks very closely, he/she will not see the scars that surround my face and neck.  In total, I had close to 100 external stitches.  Four of the bones in my face were removed and at least eight muscle were cut. In addition, my nerves were affected.  With all of this facial trauma, I recovered physically and look just like any other person.

My normalcy fools many of my friends, family, and colleagues.  Even though I am doing fantastic by bilateral Total Joint Replacement (TJR) standards, I still have my struggles.  The surgery is to improve function, and it did.  I can now open my mouth to a 38 which is amazing. I still teach and appreciate the fact that I’m able to work a full time job, and teaching English which involves much lecturing and class discussions. There are many TJR patients who aren’t able to work.  Though I do recognize that my time teaching English is limited as I can't take the pain and the stress it causes my jaw.  Even my doctors are surprised I am still doing it, and recommend that I change my position within the school.

Attempting to fit in and be like everyone else can be physically demanding and exhausting.  Talking too much causes migraines, so I’m in intense daily pain.  In fact, even if I go out and am laughing with friends, I typically end up in bed miserable. Having fun comes at a cost.  Sometimes it feels as though happiness comes at a cost.

My left implant is not functioning at 100%. I have pulsating tinnitus, and over using my implants causes my muscles to swell and the  noise to increase. It’s difficult for me to sleep without the aid of a sleeping pill.  When I talk too much, I become distracted by the noise because it’s loud. Granted, I’m the only person who can hear it. 

I also have chronic dry mouth. This may seem minor, but have you ever tried to lecture when you’re mouth feels like sandpaper? Try reading to a class so they can enjoy a story when you don’t have an ounce of saliva? Some might suggest drinking more liquids, but that won’t help.  This is a side effect of the TJR.  I sometimes stumble over my words and it’s like my mouth is not working the way I want it too.

And, of course, the worst of the pain is the never ending migraines.  Talking, lecturing, laughing, and crying increases the magnitude and frequency of my pain. It’s excruciating.  When I don’t use my jaw as much, I feel much better.

Obviously, I am on the never ending soft/liquid diet. Every so often I cheat only to end up in bed regretting that decision.  People often ask how I maintain my weight, and it’s my TJR diet.  I only chew one meal a day. Lunch is typically something extremely soft/liquid and dinner is soft food. I tend to be hungry. I’m use to it. It’s my new norm.

The integrity of my implants is of the utmost importance to me; therefore, I will do everything in my power to make them last as long as possible.  I recognize that when it’s time for a new set, the old ones will be removed and my jaw will be wired shut. Because I have FDA approved titanium implants, I’ll need to be placed back on the list and wait for approval yet again.  This will take months, and I will be wired shut and without joints in my face.  Once approved, I’ll have to endure another lengthy, painful surgery.  Other patients who have had multiple TJRs state that the pain and healing becomes worse with each surgery. Honestly, I’m horrified at the thought. The entire explant and reimplant process is terrifying.  Even though I hope that I’ll never experience this, I understand that I probably will. Implants aren’t meant to last forever. And from my understanding, titanium jaw joints don’t last as long as the nickel.  I will do everything in my power to help the integrity of my implants.

Luckily, I’m on several websites with other severe TMJ patients and I know that I’m not alone.  We support each other with kindness and understanding, which is fabulous.  I also travel to maintain my sanity and inner peace.  I just got back from Barcelona :)

The point of this is to not judge a book by it’s cover. Many people are struggling with ailments that may not be visible. 

Is Your Dentist Right For You?

So you have TMJ/TMD and you now need to choose a dentist, but how? How do you know if your dentist understands?

This is a difficult decision and most of us have to choose a dentist based on insurance. You will find a variety of answers, but the truth is that you know what is best.  You ARE the expert because you ARE living with this. 

Here are two different experiences I have had at two different dentists within the past 12 months:

I chose my original dentist because it was close to my house and I liked the dentist.  Once I had bilateral TJR, my dental needs changed.   The dentist knew about my surgery prior to my joint replacement.  My second visit after surgery is where it all went wrong.  It was an appointment for a cleaning, check-up, and x-rays.  Normally this would be fine, but Florida was in rainy season and the pressure was killing my jaw. 

I expressed that I could suffer through the cleaning, but would need to have the x-rays done at a different time.  The dental hygienist explained the importance of dental hygiene and expressed the consequences of not getting x-rays.  I fully understood how imperative it was to keep up with dental health, but just didn’t feel well.  He let the subject go until after my cleaning.  We discussed it again.  Again, I said no.  He went to speak with the Dentist.  I heard him tell her that I was refusing x-rays and she told him to convince me. 

He came back and attempted to persuade me to get them done.  I, once again, stressed that it would need to be done another day.  He then pulled out and had me sign paperwork stating that I refused dental treatment (x-rays) and that the dentist wouldn’t see me until I took them.

He then walked me to the reception and made sure to tell them that I had to reschedule because of my refusal to take x-rays at that moment, and used the signed paperwork as further proof of my refusal.

I left the dentist office angry.  Not once did they even try to understand my pain or what I was going through. 

I wrote a detailed letter to the dentist explaining my grievances.  She replied and apologized.  She blamed the dental hygienist for the misunderstanding, even though she refused to see me that day.  I have not been back since.

My new dentist is close to my work.  When I booked the appointment, I told the office about my bilateral TJR.  They asked if I had recent panoramic x-rays, and requested that I email it to them, which I did.

When I arrived, they did my x-rays first.  The woman understood my anxiety about them and even removed the x-ray holder (the big plastic thing-I don’t actually know the name) and I held the x-ray sensor in my mouth.  This made the experience much easier. 

I then described my dry mouth, and the dentist felt that it was related to surgery.  They applied for this dry mouth treatment through my insurance and I received it within two weeks.

This dentist suggested I get a water pic to help me reach my back teeth.  Overall, I felt the office was kind and they listed to me.

 Obviously, I am not going to the latter dentist.  Even though neither dentist has experience with TJR patients, the second dentist (and her office) has compassion.  She might not fully understand my struggles, but she tries...and that is what matters to me.

The biggest mistake I could have made was to stick with my original dentist because I was too lazy to find another.

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