TMJ Disorders: A Patient's Journey Through Pain and Misdiagnosis - Dentistry

Temporomandibular joint (TMJ)

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Hello Dr.
Huang, I would like to ask you if a ruptured disc in the jaw can cause unusual sounds when swallowing.
I hear a lot of crackling noises and sounds similar to bones colliding.
A misdiagnosis has caused me immense sadness and pain; a large chunk of my tooth has been chipped away, and I experience loud banging and popping sounds when I swallow.
No one can imagine the terrifying sounds I hear.
My jaw often feels dislocated, my teeth frequently clash, and my glasses fit loosely or tightly.
My jaw feels loose, affecting my ears as well.
As someone who loves hiking and enjoying delicious food, I feel sad and fearful because of this.
Climbing uphill, going up mountains, and swallowing have become major fears for me, leading to significant weight loss and hair loss.
This sound is inaudible to others and cannot be measured by any machine.
I have sought medical help everywhere but have faced numerous obstacles, switching from one doctor to another, writing letters, and spending money on countless X-rays, all while shedding tears.
Some hospitals have seen me, but the problem remains unresolved.
Who understands my pain? My aunt, seeing my distress, sought divine help and found a renowned doctor, Dr.
Li at Chuntian Clinic.
The consultation fees were high, and my family urged me to give up, but I wanted to try, especially since the sounds were in my ears.
Dr.
Li initially seemed stern and authoritative, but I later discovered he was very kind.
Since the treatment was out-of-pocket and expensive, I went to Chung Shan Hospital to see him.
While waiting, I noticed his genuine concern for patients, which is rare among doctors today.
He did not dismiss me as crazy and arranged for further examinations without discrimination based on my ability to pay.
After my visit, I wrote him a lengthy letter, as doctors can only identify potential causes based on patients' descriptions.
The sounds in my ears were something only I could describe to him.
After sending the letter, I thought a busy doctor like him might not respond, but to my surprise, he called me after his consultations to confirm the cause of my issues and suggested I see an oral surgeon.
Thus, I traveled north again to see a doctor, only to return home crying in disappointment after spending money.
I felt so sad.
Now, due to my jaw issues, when I go uphill, I hear a loud bang in my ears, like thunder, which is very painful.
I bite down hard, afraid to make a sound, worried my boyfriend will think I'm being a downer, but the pain is unbearable.
Tears well up, and I can't move my hand away from my ear.
I don't dare to hold a bowl while eating, fearing the swallowing sound will hurt.
There have been several severe instances where I heard sounds in my ears.
What should I do? Oh, God, please help me.
I hope my experience can lead to research by doctors to help not only me but also others.
I pray and hope a doctor can save me because I know others around me have similar issues.
After numerous misdiagnoses from various doctors, one finally suggested it might be temporomandibular joint (TMJ) inflammation, but I am still uncertain.
My boyfriend introduced me to a well-known traditional Chinese medicine clinic in Shalu for treatment.
I underwent daily acupuncture, and the massage therapist mistakenly manipulated my jaw, causing it to misalign.
When I was treated by Dr.
Song, he noticed my jaw had become pointed and quickly asked why.
I explained it was due to the massage therapist's actions.
He advised me to be cautious, as he seemed to sense something was wrong.
I only asked him why my wisdom teeth felt so tight.
Upon returning home, I found I could not swallow.
The next day, I went to the hospital, and the doctor said my disc had dislocated.
He warned me that I would hear sounds whenever I opened my mouth.
Consequently, I had to have my tooth filed down.
The doctor provided me with a bite splint, but I mistakenly gave it to another doctor who ground it down.
After that, I experienced extremely loud popping sounds when swallowing, along with other strange noises, and my jaw became loose.
I even experienced frequent tinnitus.
I consulted many ENT specialists, but they all provided various guesses.
When I mentioned my jaw being loose or the disc being damaged, they thought I was crazy.
Some doctors believed I was overly sensitive to swallowing sounds.
Over the past six months, I have been sending emails to doctors online.
Many responded with concern and urged me to seek treatment.
However, when I visited National Taiwan University Hospital, the authoritative attitude was extremely poor.
When I told them my jaw had been pushed up and was now misaligned, causing my glasses to fit loosely or tightly when I turned my head, the doctor simply said my glasses were the problem and needed to be replaced.
When I mentioned the strange swallowing sounds, he just replied that he didn't know.
Frustratingly, he suggested I see a psychiatrist.
I initially thought an authority figure would understand, but I ended up spending money without getting answers.
I went to ENT specialists who only performed simple tests and told me that the sounds might just follow me.
They suggested it was something wrong with my Eustachian tube.
I felt I didn't need to travel far to big hospitals, but I ended up crying after spending money.
From small clinics to large hospitals, including National Taiwan University, Tri-Service General Hospital, Changhua Christian Hospital, and Chung Shan, I had countless X-rays taken.
I spent my vacation and salary seeking doctors, and my mental state deteriorated as I cried repeatedly, feeling like no one believed me.
Many doctors had poor attitudes.
Where can I find a good doctor now? I have been emailing doctors daily, initially thinking I found one who understood my situation, Dr.
Zhou, and was extremely happy.
However, when I consulted him, I told him my jaw had been pushed and was now misaligned, causing loud swallowing sounds and a loose jaw.
He didn't believe me, slammed the table, and told me I was looking for trouble.
After taking my money, he sent me home.
I cried all the way back to Taichung from Taipei, feeling truly heartbroken and in pain.
No one, no machine, can hear these sounds.
I am so scared because the sounds are overwhelming.
Eating is accompanied by a cacophony of noises, and I don't know where to position my jaw.
I often shrug my shoulders in fear while eating and crying, sometimes missing meals.
At times, I can't even open my jaw and have to shake my head to do so.
When I yawn or cough, my ears make a popping sound.
I don't know what is wrong inside.
Where should I go to find a doctor to help me? My jaw has been ruined.
When I called that hospital, Dr.
Song noticed something was wrong at the time, but now she claims that losing weight can also make the jaw appear pointed.
Who would believe that? Who understands my sadness, fear, and anxiety? I have never fought with my boyfriend before, but this time we had a huge argument because he couldn't hear the sounds in my ears.
He doesn't realize how my jaw position affects my eating.
He thinks I'm making a big deal out of nothing.
My hair and weight have continued to drop because of this.
Tears have flowed endlessly, and I've even had thoughts of not wanting to live.
I can't cry at home for fear of worrying my mother, can't cry at work for fear of losing my job, and can't cry in front of my boyfriend for fear of fighting.
I always end up crying alone in the car on my way to and from work.
Now, when I go uphill, my ears hurt, and the swallowing sounds are even louder.
As someone who loves food and hiking, I have lost all interest.
I am constantly seeking help, but hope seems to fade away repeatedly.
I often ask myself who can save me? I am truly suffering.
I feel so angry and wish I could take medication to end it all.
Otherwise, I don't know what to do.
My ears can barely tolerate the increasing volume of the sounds.
With so many hospitals, no one can help me.
Authorities only seem to care about those who clench their teeth.
Who should I turn to for help when I have been misaligned by external forces? A colleague expressed concern for me and mentioned a health magazine discussing dental issues, thinking I might find relief.
To my dismay, it was written by Dr.
Zhou, the very doctor who made me cry.
My initial happiness quickly turned to disappointment.
It is truly cruel.
When I explained my situation to him, he didn't believe me.
Now he has changed the name and included my condition in his book as his discovery.
I am deeply saddened.
He is not a doctor and does not believe in being an authority.
By chance, I met a friend who was in a car accident and had a severe jaw dislocation.
I am not a doctor, but I could see the issue.
He happened to have seen the same two doctors, who claimed he looked that way originally.
He also experiences strange sounds when swallowing and has sought help from many renowned doctors without success.
He found a reputable doctor, who told him his jaw was dislocated from the accident and offered assistance.
That doctor, however, asked him why he wore his helmet so tightly.
He sadly gave up.
Who can help people like us? How can we return to our original selves? Why do doctors always tell patients to accept their condition? Don't they understand our pain? I feel immense hatred in this situation because my tooth was filed down, my jaw became loose, and I experience terrifying popping sounds when swallowing.
My relationship with my boyfriend has suffered countless strains, and I have cried until I can cry no more.
I spend money as if it doesn't matter, facing repeated disappointments.
My mental anguish has gone from disappointment to despair.
I am so sad.
I am scared.
I am heartbroken.
Finally, a doctor advised me to seek help, but the outcome is always the same: I am told to accept my situation.
Oh God, I cannot speak clearly, cannot have dental work done, and the swallowing sounds are frightening.
This is a lifelong issue.
That doctor hopes I will write a book about my experience.
He believes it is not suitable for him to write due to his profession.
He wants me to share my story to warn others against being carelessly manipulated.
He said he would help me sign it.
I don't want to sign anything; I just want someone to heal me.
I would be grateful to them.
I hope somewhere there is someone like me, seeking help.
Good doctors, where are you? We need you.
Please save us.
I am a person in extreme panic and fear, feeling helpless.
This journey has been exhausting.
Thank you, Dr.
Huang, for reading this lengthy letter.
I am deeply grateful.

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Jun, 30~39 year old female. Ask Date: 2010/10/02