My TMJ/D Nightmare

Who knew the Friday evening of July 28, 2014 would be the beginning of the most physically painful experience of my life. A true test of my endurance and patience was about to begin. On this day, I was eating dinner with a friend at a local restaurant. I wasn’t eating anything unusual or out of the ordinary. All of a sudden while chewing, one side of my jaw locked in a weird position. I could wiggle it and it would come loose however it continued to lock every time I ate throughout the entire weekend. For several years leading up to that night, I had experienced a plugged feeling in my ear and popping on that side of my jaw when I chewed gum or ate. It never hurt and I shared the information with my dentist who wasn’t concerned, so I wasn’t either.

After my jaw getting “stuck” all weekend long, which feels really weird, I went immediately to my dentist Monday morning. He said I probably ground my teeth in my sleep, needed a night guard, no x-rays taken, no exam – just a mouth guard. A very expensive, non-insurance covered mouth guard. I have never been told I grind my teeth, have never had any reason to believe I did, and my teeth have no signs of grinding. However, I followed his orders, got fitted for the mouth guard and got it about a week later. In the meantime I was hesitant to eat or open my mouth because the locking continued. The day I got my mouth guard I used it that night, so relieved that I had the solution to the problem. After a tense and worry filled week, I looked forward to waking up and my jaw being back to normal.

Not so fast. Morning came. Much to my terror when I took out my mouth guard, my mouth was frozen open. Completely stuck. It would not close. I panicked. It took me about 20 minutes to get my mouth to close and eventually I had to just force is shut. This caused intense pain. I called my dentist as soon as they opened. The dentist wouldn’t even talk to me but just left a message for me to go see an oral surgeon. More waiting with excruciating pain setting in.

I was starting a new job the next day. The pain was so severe I couldn’t focus on learning my job. It hurt to talk, smile, laugh, eat, speak loudly, touch any part of my face, walk, move, sleep, have I left anything out? Basically it hurt to be awake but it was too painful to sleep. I waited a week or so to get into the oral surgeon and he was quite a disappointment. He was rude to me and acted like I was bothering him. I was in such a panic by this point, pain like I had never felt in my life. I didn’t know how I was going to function. I am a counselor so using my mouth is pretty important! The oral surgeon told me to go two weeks without chewing and then come back to see him. Well, not chewing isn’t easy but it’s not impossible either so I did it. It was at this point well into a month of such unbearable pain I didn’t know how much more I could take. My mouth would only open a small amount. I could barely fit a tooth brush in it. I went back for my second visit again in tears. He was clearly unimpressed with my pain and asked me as he came in the  room, “When did you start crying?” I was stunned and he asked again, “When did you start crying? When I came in the room?” I couldn’t believe his nerve but still felt he was my answer to the problem as I had nowhere else to turn so I informed him the pain was so bad I couldn’t stop crying. I remember being in his office and looking at the picture he had of his wife and kids and feeling sorry for them. I had seen him also be short and rude with his staff. I asked him to take an x-ray. I implored him. I couldn’t stop telling him and anyone else who would listen that there was something wrong with my jaw. He said he didn’t need an x-ray because he had the one from 6 months ago that my dentist had sent over. He didn’t seem to understand or care, no matter how much I told him that that x-ray was from prior to this happening. He prescribed me an anti-inflammatory that had no impact whatsoever. He ordered an MRI which he informed me was normal. Then he lost my MRI CD I had left at his office in his care. It took me three weeks to get it back, all the while his rude staff insisted I took it home with me. They finally called me and said they had it. On my third visit he informed me that he could do botox injections in my jaw/cheeks and if I didn’t agree to it he wouldn’t see me again. Apparently it is not approved by the FDA but sometimes botox works with TMJ (temporomandibular joint) pain by paralyzing the muscle. It doesn’t last more than a few months and often has to be continued indefinitely. I was at a complete loss for what to do. Again, my insurance wouldn’t pay but I agreed to do it for lack of any better solution. At this point, I had been crying, not talking, barely hanging onto my job, unable to function in any productive way for about five months – it was almost Christmas time. I was willing to try whatever was recommended. Let me tell you, botox HURTS. He told me it would take 3 weeks for maximum benefit and I was so excited that this might be the answer.

Botox was not the answer. In fact, more pain than I could even imagine ensued and I thought I was already at my peak of pain tolerance. I called his office. I told them I understood that I had not reached maximum benefit yet but I was also pretty sure I wasn’t supposed to be hurting more and as bad as I was. The oral surgeon got mad at me and told me not to call him back for three weeks. I couldn’t believe how cold and uncaring he was. Again, I did as I was asked and went through the Christmas holidays feeling like I was going to die. My final appointment with this so called oral surgeon was to get a referral to someone who wanted to help me. He told me I could choose between Charlotte, NC and Charleston, SC. Being familiar with MUSC in Charleston, I choose them. It took three weeks for his office (and several pleading phone calls from me) to get them to make my referral.

During the course of all this waste of my time and 6 months of pain I also tried many other things. I went to acupuncture (again not covered by insurance) many times. I love acupuncture but it didn’t help my issue. At the advice of a friend I went to a chiropractor which was a horrible mistake. He beat on my jaw directly in front of my ear where the joint is with a hammer-like tool, assuring me this would help.  I ended up in the emergency room the next day so swollen and sore I had to get an anti-inflammatory shot by a testy nurse who had no time or patience for a patient with such unimportant issues. The ER doctor assured me I would be back to normal in a few days. At this point I had no “normal” and certainly didn’t experience it in a few days. I tried essential oils, all different blends for joint pain, muscle pain, you name it. Nothing helped. I waited patiently for my appointment at MUSC.

My visit to MUSC finally rolled around. By this time it was well into 2015. No let up in pain, no increase in mobility, no decrease of symptoms. It even hurt to ride in the car due to the vibration. I was excited to go to MUSC and see a REAL professional however I was confused about why I had been referred to a neurologist. She was nice. She talked to me, asked a lot of questions and ordered an MRI. I kept explaining my problem was in my jaw, not my head. She assured me a jaw issue had been ruled out by Dr. Not-So-Smart-or-Nice.

Several more months went by of me seeing the neurologist and then being referred to the Dystonia specialist. That was ruled out as well. At this point a year had passed. The worst year of my life. The Dystonia specialist suggested I see the Oral Surgery department. What?! The Oral Surgery department you say? What a novel idea! The million dollar question is why wasn’t I referred to them in the first place since MY PROBLEM IS IN MY JAW!!!!!

June of 2015, I had my first appointment with Dr. Kinon Lechelop and one of his fellows, Dr. Swanson. I met with Dr. Swanson first. He asked my symptoms, listened like he cared and right then and there told me what was wrong with my jaw. He explained that I had anterior disc displacement without reduction. In layman’s terms this means a year earlier when I couldn’t close my mouth after taking out the mouth guard, the disc had moved out of place and had been displaced for a year which was why I was in such pain, and couldn’t open my mouth. By this point in my life, I was leery of everything and wasn’t sure this wasn’t just another false hope. He then stated, “Let me take an x-ray and I’ll show you.” WHAT?! An x-ray?! Another novel idea. Wish I had thought of that! He took an x-ray and showed me the differences in my left and right jaw. Clearly the painful jaw was different and confirmed what he had told me. Dr. Lechelop spoke with me also and agreed with the diagnosis. I cried tears of joy because now I had someone who listened and heard me and wanted to help. They explained that I would need surgery to put the disc back in place and then he would screw it in so it wouldn’t come out of place again. He asked to see the MRI that had been done earlier for Dr. Not-So-Smart-Or-Nice. I sent the MRI to Dr. Lechelop and he called me within a few days. With shock in his voice he asked, “This is your MRI?” Why, yes of course it is. What else would it be? He informed me that no one had read the MRI, it was impossible because it wasn’t even readable the quality was so bad. Back I went to MUSC to have another MRI from a real professional.

Surgery was set for August 13, 2015. I was so excited. I couldn’t wait to be normal again. I finally felt validated by someone who knew and understood what I was going through. They really wanted to help me. Dr. Lechelop trains the other interns/fellows, whatever they are. He is superior in his field.

I woke up from surgery wrapped up like a beehive from the top of my head to under my jaw, and raring to go. Dr. Lechelop informed me the disc was much worse than anticipated. Due to having been displaced for a year it was a mess and couldn’t be saved. It was folded over itself, distorted and had a hole in it. As a result, he had to cut my temporalis muscle and pull it down to my jaw joint to make it into a disc. Research has shown that works better than using an artificial disc as the body accepts it better than foreign material.

My recovery didn’t go as well as hoped. Again, problems arose due to the length of time of the displacement. My masseter and lateral pterygoid muscles were in a constant spasm and had probably been that way for a year hence the previously mentioned (10,000 times) excruciating pain. I spent many months swollen. I had three jobs to maintain – a full time job as a supervisor in a drug and alcohol agency, a private practice, and I am a college professor. I had to work this much to pay for all the medical expenses insurance didn’t pay for which racked up fast and furious. For the next year, I ended each day swollen, sore, exhausted.  All I did from July 2014 until now was go to work, cry and go to bed. After six months, Dr. Lechelop had done all he could for me and transferred me to a myofacial pain specialist who I continue to see.

I am now 1 1/2 year post op. I still can’t sing, talk loudly, laugh or smile too much, open very wide (but better than before), eat hard, chewy or tough things, or exercise. All of these things still make me hurt. I will never be able to eat normally. I will never be able to have the life I did. I’m angry and I’m grateful. I’m angry with Dr. Not-So-Smart-Or-Nice for being an idiot and refusing to do something as simple as take an x-ray which would have saved my disc hence saving me from a lifetime of pain and suffering. I’m angry that I have spent an unnecessary fortune on something that could have been prevented if I had a competent and caring doctor to begin with.

There are many things to be grateful for though. Dr. Lechelop and his team first and foremost. I can never thank them enough. Also, while spending quality time with the neurologist, flexing my feet back and forth, she did find a brain tumor that I was assured was nothing. A year later with a follow up MRI, it has proven to have a life of its own and may need to be surgically removed. I have named her Tumorosa. Some of you reality TV watchers will get that. For those of you who don’t, it’s not really important.  Lastly, I believe this horrible event has helped me become a better counselor. I now listen more and talk less. That is always good. Ask my mom.

tmj

July 22, 2017

It’s been two years since my surgery. I’m still in pain. This has changed my life completely and I’m afraid permanently. I’m now getting botox injections to help paralyze the muscles in my face. It eases some of the pain however doesn’t stop the muscle spasm and it’s something I’ll have to continually do for who knows how long, maybe forever. I haven’t been able to come off any of my medications which is a disappointment. I thought by this point I would be leading a normal life.

I still believe if I had been diagnosed properly to begin with the disc would have been in sufficient shape to put back in place and I wouldn’t have been attempting to function normally with an out of place jaw and dislocated disc that continued to get torn up more and more as time went on. The things I can’t do remain the same, talking to much, smiling, laughing, speaking loudly (forget yelling!), anything strenuous, exercise, anything that jars me such as bumpy roads, boat rides, jumping, etc. My diet is restricted to nothing sticky, chewy, crunchy, and tough. This eliminates, crackers, chips, fruit with cores, most meats, tough breads, crust, the list goes on and on. I have little to no range of motion in my jaw and limited range of motion in my tongue. My socialization has decreased to nothing as it is just too draining. My activity level is nil because I will pay the price for it for 1-2 weeks afterwards.

I filed a complaint with the dental board July of 2016. I not only stated I felt the doctor had not met the basic standard of care by refusing to take an x-ray when I had finally been diagnosed by a doctor who simply listened to me and then took an x-ray but I also felt he was negligent by then referring me to a neurologist instead of another oral surgeon which I thought was where I was going. After several appointments with the neurologist who stated I had been referred to her because the previous oral surgeon stated “there is nothing wrong with your jaw” I was then moved on to a dystonia doctor who ruled out dystonia and said “I think we need to refer you to our oral surgery department.” All of this took months, not to mention many visits to MUSC , which was hour hours from my home. Why Dr. Idiot didn’t send me to the oral surgery department to begin with is the million dollar question.

I had already taken a lower paying job so I wouldn’t have to talk as much and ultimately quit teaching, which I loved, because it was just to painful. My income was taking a nosedive while my medical expenses were skyrocketing.

After a year of waiting for a response from the dental board I received a letter today. Everyone I shared my story with couldn’t believe how crass and rude my initial doctor was to me but also neglectful of my medical needs. If someone physically cannot open their mouth there has to be something wrong. The letter stated that all claims against him had been dismissed. I feel let down. I feel like a jury of his peers only listened to him but never heard me. I felt like it’s the good old boy system, protecting each other. I feel betrayed, ignored, dismissed. I was especially shocked at the outcome due to my knowledge that he had a previous complaint against him that involved the death of a patient. In that case he was found guilty of many egregious medical errors. It’s not a secret. It’s on the SC Board of Labor, License, and Regulation public website.

I had previously attempted to get an attorney however none that I spoke with wanted to take my case because I couldn’t prove he was at fault. What do attorneys get paid for? I though of filing a complaint against the radiologist who read my MRI and said it was normal when it clearly wasn’t. Yes, the MRI that Dr. Lechelop stated was unreadable therefore nobody could have read it. It appears however that radiologists don’t have licensure status so there is no one to complain to.

Every time I drive by Dr. Idiot’s brand new, fancy office I feel like going in and asking if he remembers me. I want to tell him how my life has changed. I want to give him a lesson on how to treat people. People in pain, scared, hurt, confused, not knowing where else to turn. I want to tell him he’s a jerk. I want to tell him he might be in the wrong field. I want to throw eggs at his new, fancy door.

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2 thoughts on “My TMJ/D Nightmare

    1. Working on it. No attorney would take the case unless I could prove he was at fault. Isn’t that the attorney’s job? I have filed a complaint with the state medical board. A rep came to Greenville to meet with me in August. She said the longer it takes the better it will look for me. She said it might even take as long as January – I haven’t heard anything yet. The fact that he had a man die in his office while under anesthesia and they were not monitoring his vital signs is not an asset for him. He settled that one for $3 million. Of course I didn’t know this until I realized he was an idiot and I looked him up.

      Liked by 1 person

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