The Never Ending TMJ/TJR Drama

Most of us are accustomed to pain, fighting with insurance companies, and dealing with doctors.   It's not fun...every once-in-awhile you get a break, and then some other issue manages to rear its ugly little head.

For me, this is the fact that I no longer have an OMS.  Not only do I not have an OMS, but my old surgeon left for another job in another state without notifying his patients.  I was flabbergasted to learn of his move after returning this summer.  How could he not even send an email?  What am I supposed to do now? 

With little to no other alternatives, I made an appointment with another surgeon in his office.  I scoured the Internet for information about him and TJR surgeries, nothing.  I searched the TJR directory (http://www.astmjs.org/public.htm) and he was not listed.

Last week I drove to Miami with my list of questions only to find the office canceled my appointment and I never got the message. I spoke with everyone at length about my concerns.  I've know the people in the office for approximately nine years.  They told me to give this surgeon a chance and that he is very good. 

I went back down to Miami yesterday.  I was armed with questions:

Do you often do TJR?  His reply was that most doctors prefer not to do them but he has been in on the surgery and done the surgery with other surgeons.  

That was all I needed to hear, he is not qualified to get near anyone with TJR. 

He did do an exam which consisted of lightly touching my jaw.  His touch wouldn't have hurt anyone.

I told him my symptoms:
Headaches/migraines (but that's normal for most of us)
Pulsating Tinnitus and it sometimes gets so bad I feel my ear is throbbing (not hurting) and full
Sore (when I bite)
Eye pulling/bothering me 
Dry mouth

I was prescribed muscle relaxers and anti inflammatory meds.  I am to take it every day for 30 days and a soft and liquid diet.  No cheating.  Of course, this is after the girls cruise. 

He looked at my panoramic xray and nothing stood out.  If this doesn't help the next step is blood work to see if it's an infection.  As far as the dry mouth, he told me to drink more water.  I explained it's been going on for a year and it's not the water.  He didn't seem to bothered by it (of course it's not his body).  He doesn't believe that my dry mouth is connected to my TJR.  I do.

Here's why:  I went to a dentist and a local oral surgeon.  The oral surgeon examined my tongue and said that he felt no blockage and he felt that it felt moist.  He stated that the muscle and/or nerve damage probably caused this. 

I asked about physical therapy exercises and he said not to do them.  He wants me to rest my jaw as much as possible. 

I am fine with the conservative method.  I am not fine with the fact that I believe he is under qualified.  Right now, I am at a loss.

        Happy moments!

Learning to go with the Flow

In March, I decided to go to Nicaragua to learn Spanish.  I registered at The Dorian School in Leon, and was planning on taking an intensive three week course and living with a host family.  Of course, that was all planned before the protesting began.  

While in Asia I contacted the director of the school, and asked if it was still safe.  While watching the news, I noticed that the violence appeared to be escalating.  He assured me everything was fine and that he would notify me if anything changed.  I believed him, and was not worried.  

Ten hours prior to my flight, I received a text from the director informing me that I couldn't go.  The violence reached Leon and I would not be safe.  In fact, the banks were closed, the schools were closed, and the government buildings were closed.  

While disappointed at first, I understood.  I have since watched CNN Espanol, and it shows the level of violence in that country.  I'm extremely thankful I did not go.

Working with Expedia and American Airlines, they gave me several options.  In the end, I chose Panama.  I had 24 hours to figure out my plans: Where was I going?  What school was I going to attend?  What should I pack?  Where would I stay?  

I stayed two weeks in Panama City and attended school in Casco Viejo.  While there, I stayed with a host family in a very modest, yet conveniently located apartment.  To be honest, I saw many amazing sights and learned a lot, but the city was not for me.  I could have spent 2-3 days in the city and seen all the touristy sites.

Those two weeks gave me time to decide what to do with my final 10 days.  I located a school in Boquete and booked a flight.  I stayed in a a hostel, and met amazing people.  I loved everything about this area.  

  I hiked and saw many waterfalls I volunteered 

 My friend an I broke snuck onto a farmers field and then into
an abandoned castle.  It was amazing!  My Fave!

 I went whitewater rafting.I actually went into the tour agency to discuss animal rescue and walked out with a receipt for this adventure.  It didn't even occur to me until much later that it was a bad idea.

How is my year of YES with my jaw....well, it's so so:

1) If you plan on doing a home stay and you have jaw problems, make sure you clarify that before hand.  Obviously, Panama was not a well thought out vacation, so I didn't do that.

2) White water rafting-It was amazing.  It was too much for my jaw.  Way too much.  

3) My pulsatile tinnitus has been acting up.  I'm not surprised.  Summer storms cause it, flights cause it, and I'm sure being so active didn't help.  I'm not sure how to make it stop.

4) I am on a soft food/liquid diet, and will be for at least a week (if not longer).  I might sneak one cheat day in there, but I will try to be stick to it.

5) Ice!  I am icing my face.

Overall, I am thankful for the experience.  Even though this adventure was completely unexpected, I enjoyed it and I learned quite a bit.  But I am definitely glad to be home...at least for awhile.

I came home to my foster boy, Van!

                                                             My new kitchen!

Traveling After Bilateral TJR

Summer Vacay 2018 

Traveling with TMJ/TMD has been a complete nightmare during many flights.  As much as I would like to jet set around the world, lack of funds and jaw pain has stopped me in the past. 

Prior to having bilateral TJR of the TMJ, flying was frightening.  Taking off slightly annoyed my jaw.  However, the decent in preparation of landing was excruciating.  It felt as though someone was using my head as a voodoo doll and sticking pins in it over and over, and twisting these pins.  There were times I was near tears (which if you know me, exemplifies the amount of pain I was going through).  After the landing, my jaw and ears felt tight.  It would eventually go away.  Numerous people on TMJ sites gave me remedies such as using Afrin before taking off, using pressure controlling earplugs, etc.  While I appreciate the advice, none of it was successful in my case.  I must note, that I have met several people whose eardrum burst during landing.   The pain while traveling was just another depressing factor when it came to my jaw.

Several weeks prior to my surgery, I had a dream.  I dreamt that I was floating above my body next to God.  My body was on a surgical table below us, and a team of nurses and doctors were working on it.  Suddenly the beeping sound in the room became irregular and there was a loud incessant ringing.  The room was frantic, but then calmed.  I looked at God and questioned, “is that it?  Did I die?”  His reply was “yes, not as bad as you thought, right?”  It wasn’t.  I woke up terrified.  I was sure this was a sign. Thank goodness it wasn't.  This dream was the catalyst to my year of Yes!

Because of that dream I dedicated the next year (or so) as my year of yes.  If I survived the surgery, which I obviously did, I would say yes to everything (within reason) that I want to do.  

When the surgery was deemed successful, I began to make plans.  Six months after, my friends and I planned a girl’s trip.  The flight didn’t bother me, so I knew I could plan my dream vacation to Vietnam Cambodia, and Laos. 

Three weeks in those countries was amazing!  Every day was something new. 

 <Going to the Cu Chi tunnels was a dream come true (Vietnam)

being blessed by a random monk, who opened a temple for us inPhnom Penh>

<Just chillin on the steps of one of the temples at Angkor Wat, Siem Reap


                                                                                                                     
     Angor Wat Sunrise

                                 One of these things is not like the other, Pakse Laos

<Vientiane,Laos

                    ^Feeding an elephant

<Why stay in the building, when you can enjoy the view on top of it-Bach Ma National Park, Hue, Vietnam

 Cruising down the Mekong Delta>

While I have thousands of beautiful pictures of these adventures, having jaw problems can make things a bit more difficult.  Here is how:

1) SouthEast Asia is known for their inexpensive, yet amazing massages.  I had a few of them, but it does bother me to lay face down.  I also had to make it very clear not to touch my head.  In fact, I quit indulging in them at the end.

<pre massage soak

                                       massage + cupping $30>>

<30 minute fish massage and beer $2

2) I still have to be careful with food

 $1.50-$2 will get a complete meal and a beer.  However, slurping noodles using chopsticks hurt my jaw

<Bugs Cafe in Cambodia

...I just had to make sure the critter wasn't to crunchy.  My favorite was the bug fondue and the tarantula donut!

3) I still need to be careful about how I hold my jaw and teeth chattering if cold.

<Back Ma National Forest had many waterfalls and pure water holes we could swim in.  The air in the mountain was cooler and the water was cold, so I enjoyed the views from the rocks.

4) Many of the bars and hotels in Vietnam sell nitrous oxide balloons.  It could have been coincidence, but after having sinus issue in Laos and a flight back to Hanoi...my jaw was sore and my tinnitus was acting up.  I had one balloon and several beers, and felt back to normal the next day!My surgeon will here about this lol.

6) I took 13 flights within three weeks.  I must carry muscle relaxers.  I still feel pressure when the plane is landing.  It doesn't matter if the flight is 15 hours or 45 minutes, I will always be concerned about the landing.  My jaw does not bother me during the flight, only the landing.

I know many are concerned about traveling with jaw problems or after surgery.  The best piece of advice I can give is to listen to your body.  

Traveling is good for the soul, and I am not complaining about any of the changes I had to make because of my jaw.  So what?  I had to stop eating noodles that were served with chopsticks...I at something else that was delicious instead.  There are always options!  

Now...on to Nicaragua!!!!!!!!!!!!!!!!!!!!!!!

Happy 1st Birthday TJR Joints

                                                    

May 8^th and 9^th –Happy 1^st birthday to my new and improved jaw!

One year ago today, I went in for a bilateral titanium joint replacement of the TMJ.  A decision I did not take lightly. Full of anxiety and fear, yet hopeful for an unknown future. 

                                                                                                     
       

I awoke from surgery to learn that everything went better than expected.  After that, I needed to heal and attend physical therapy.  I returned to teaching three weeks’ post-surgery. 

 This is my pic after surgery #pumpkinhead

Healing was a process, but not as horrific as I had imagined (and heard).  I believe in expecting the worst and hoping for the best. My high tolerance for pain aided in my ability to stop taking pain meds shortly after I returned home, and my aptness to heal. It's hard to imagine that I had nearly 100 stitches around my face.  Here are my scars one year later:

       

Within limits, I can eat whatever I want.  If it hurts, I don’t eat it.  If I overdo it one day, I eat all soft or liquids the next.  It’s all about moderation and listening to my body.

The weather can still cause tightness and migraines.  This will never change, but I am use to it.  I normally have good days.  I do feel mild discomfort in my face/jaw most of the time, but it is nothing to complain about.  In fact, I have a few days here and there where I feel no pain or discomfort.  Unfortunately, I do have the occasional bad day, but it is definitely manageable. 

When I’m stressed, I must hold my jaw in a tense manner as I get migraines and muscle tightness.  I attempt to focus and release the tension I am holding in my face, but sometimes it is not possible.  For example, the Douglass Massacre isn’t far from my home.   I know many people who were affected by this (students, parents, teachers).  I also teach at a local high school, and the weeks after were extremely unnerving and heartbreaking.  My jaw was sore for a while.

                       My friends and I at the #neveragain rally in Parkland                     

                                                                        My school's response to the national walkout (#OHSUPPORTMSD)

                             
 What is the biggest change?  My New Year’s resolution is to say yes to everything I want to do.  I’m typically quite a frugal person, but not this year.

My flight to New Orleans in November helped me recognize that I no longer needed to fear the pain of cabin pressure changing when the plane lands because it is no longer unpleasant.  With that realization, came infinite possibilities.

 

I have decided to live life to the fullest.

New Year’s Eve I spent on Deerfield Beach with a few close friends

I spent the weekend in South Beach and went to the Fountainebleau event and the South Beach tent event portion of the Food and Wine Festival!  Thank you Heather for making this possible, as you do every year!

I sat front row at Wicked!  By the way, many people said it was a mistake to purchase tickets so close to the stage because I would be uncomfortable, but it was fabulous!  Always follow your gut and do what is best for you!

Spring Break I went to Guatemala for four nights.  I was supposed to go with a friend, but she decided not to go last minute and I decided to try out solo traveling.  It was an amazing experience and I met many new people and saw so many beautiful sights.  In fact, I loved Guatemala so much I can’t wait to go back and visit!

     

I spent my birthday in Wynwood, Miami. 

I spent the night in Fort Lauderdale, to watch the air and sea show.  This is my first time ever going!

I went to the Pink concert in the middle of the week.  If you know me, you know this is unheard of.  I also paid more for box seats with my friends. 

I still volunteer with my rescue and foster dogs with 100+ Abandoned Dogs of The Everglades.

Deaf Ed (above)                        Littles ^                                                

                   

While I never expected my jaw to be perfect, I am pleased with the results.  Within a year, my world has completely changed and I am excited to see what the future has in store.  I absolutely DO NOT regret getting this surgery.  I knew that it was risky and that there are many "TMJ" people who believe that this is not the right option, but for me it was.  

My family and friends have been paramount to my recovery and I thank you very much.  I am blessed to have such wonderful, caring people in my life.