mdla
01-16-2004, 04:37 AM
I wanted to share my experience from today with an oral surgeon with you.
I made the apt. the week after xmas. During the month of Dec. On the advice of my "pain management" and GP docs, and my gut, I decided to try to live again. I tried to talk more than to just my doctors, I spoke to friends. I tried to chew more than soup (an omelet and noodles shame on me). I tried to go with my friend to volunteer to deliver xmas presents to cancer patients.
I did so with and returned to my home every time wishing I was dead. My facial muscles hurt so much, the joints pressed into my ears creating intense pressure and ringing. I wore my Tens unit more than I had it off and went through 80$ worth of electrode pads.
I decided, that going into TMJ surgery is almost suicidal. Its more risky than a bungee jump or many of the other things people do for thrills. You have to want to realize that you many really never have reason to smile again, you may never get that hamburger after all, and that Vioxx and Vicodin will become your best friends.
Truth is I feel like I don't live anyway. I can't sleep without pills, can't wake despite 3 alarm clocks. I can't talk enough to enjoy a conversation with my mother, much less to work. Many days I wake with such awful dizziness I can't drive and have to cancel the doctors appointments I rely on so desperately for management of this terrible, most understood disorder.
And we all know the worst insult of all - no one believes us, not even the doctors we gladly give our life savings too. Instead of admitting they cannot help us, the medical community hides behind the psychological excuse. "You need to get some counseling or take some antidepressants," they tell us, despite clicking, expensive MRI's and tomograms that document the physicality of the problem. The only bi-lateral joint in the body defeats them, it defeats us. We are the ones that suffer and run to our support groups at 3 am with ringing ears.
So today I was convinced I wanted a change from this maddening cycle. But this surgeon tells me surgery is not a good option. What? He tells me,
"You're too young and pretty to be dealing with all this, but surgery may make you a whole lot worse. Lets stick with the pain managment and splint therapy"
My point was that Im too young to have to get shots to unfreeze my face, to know what a COX-2 Inhibitor is, all the names of the trycyclic antidepressants and muscle relaxants and their side effects. I understand many people are dealt health injustice at a young age, many younger than me. But if I am to suffer everyday with this, I want the respect and acknowledgement from doctors, health and disability insurance companies, and work environments that TMJ disorder is real. It may cause a great deal of pain and confusion in our heads, but it's not "in your head."
"Is this too much to ask?"
He looked down at my chart and said "No"
I made the apt. the week after xmas. During the month of Dec. On the advice of my "pain management" and GP docs, and my gut, I decided to try to live again. I tried to talk more than to just my doctors, I spoke to friends. I tried to chew more than soup (an omelet and noodles shame on me). I tried to go with my friend to volunteer to deliver xmas presents to cancer patients.
I did so with and returned to my home every time wishing I was dead. My facial muscles hurt so much, the joints pressed into my ears creating intense pressure and ringing. I wore my Tens unit more than I had it off and went through 80$ worth of electrode pads.
I decided, that going into TMJ surgery is almost suicidal. Its more risky than a bungee jump or many of the other things people do for thrills. You have to want to realize that you many really never have reason to smile again, you may never get that hamburger after all, and that Vioxx and Vicodin will become your best friends.
Truth is I feel like I don't live anyway. I can't sleep without pills, can't wake despite 3 alarm clocks. I can't talk enough to enjoy a conversation with my mother, much less to work. Many days I wake with such awful dizziness I can't drive and have to cancel the doctors appointments I rely on so desperately for management of this terrible, most understood disorder.
And we all know the worst insult of all - no one believes us, not even the doctors we gladly give our life savings too. Instead of admitting they cannot help us, the medical community hides behind the psychological excuse. "You need to get some counseling or take some antidepressants," they tell us, despite clicking, expensive MRI's and tomograms that document the physicality of the problem. The only bi-lateral joint in the body defeats them, it defeats us. We are the ones that suffer and run to our support groups at 3 am with ringing ears.
So today I was convinced I wanted a change from this maddening cycle. But this surgeon tells me surgery is not a good option. What? He tells me,
"You're too young and pretty to be dealing with all this, but surgery may make you a whole lot worse. Lets stick with the pain managment and splint therapy"
My point was that Im too young to have to get shots to unfreeze my face, to know what a COX-2 Inhibitor is, all the names of the trycyclic antidepressants and muscle relaxants and their side effects. I understand many people are dealt health injustice at a young age, many younger than me. But if I am to suffer everyday with this, I want the respect and acknowledgement from doctors, health and disability insurance companies, and work environments that TMJ disorder is real. It may cause a great deal of pain and confusion in our heads, but it's not "in your head."
"Is this too much to ask?"
He looked down at my chart and said "No"
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saaraah
01-16-2004, 09:26 AM
oh, mdla, i can relate all to well to your post. *hug* through this whole ordeal, one of the things that has hurt the most [emotionally] is the way health professionals have treated me without respect. i, too, feel too young to know so much about 1 little joint in the body. i shouldnt know more about it than many doctors, right?
anyway, i want to say that im here for you - i understand your struggle.
take care,
- saaraah.
anyway, i want to say that im here for you - i understand your struggle.
take care,
- saaraah.
cally22
01-16-2004, 12:05 PM
Dear mdla,
I can relate to your situation so much. I am going to be 18 in 6 days, and i have been dealing with tmj since I was 13. I too have seen specialist after specialist, and have been told, and my parents were told despite their mri findings, that this pain I was describing was all in my head. My third oral surgeon believed me, but after four surgeries he gave up on me and sent me to pain management.
I know how discouraging it can get, and I worry about my future, I used to have so many dreams and ambitions, and now i have to come back to reality. A reality where everything I had once dreamed of seems to be fading more and more with the pain I deal with...
I keep trying though, but everytime i seea doctor (new or old) it is hard to get past the questioning, unbelieving faces. I truly hope someday (soon) the medical community realizes that tmj is real and the pain that the sufferers deal with is horrible and a true reality.
Good luck withy your tmj, problems, and i hope and pray that things will get better.
cally22
I can relate to your situation so much. I am going to be 18 in 6 days, and i have been dealing with tmj since I was 13. I too have seen specialist after specialist, and have been told, and my parents were told despite their mri findings, that this pain I was describing was all in my head. My third oral surgeon believed me, but after four surgeries he gave up on me and sent me to pain management.
I know how discouraging it can get, and I worry about my future, I used to have so many dreams and ambitions, and now i have to come back to reality. A reality where everything I had once dreamed of seems to be fading more and more with the pain I deal with...
I keep trying though, but everytime i seea doctor (new or old) it is hard to get past the questioning, unbelieving faces. I truly hope someday (soon) the medical community realizes that tmj is real and the pain that the sufferers deal with is horrible and a true reality.
Good luck withy your tmj, problems, and i hope and pray that things will get better.
cally22
mslilja
02-05-2004, 12:41 AM
Do Not Again Do Not Let Them Do Surgery On You!!!!!!!!! It Will Ruin Your Life Like Its Not Already Ruined, But Believe Me You Do Not Want Any Implants Put In Your Jaw. I Had Both Sides Replaced In 1997. I Wish The Dr. Would Have Told Me No. He Was Only Looking For The $$$$$. This Past June The Right One Broke While In My Jaw, And Had To Have It Replaced. Oh My God Do Not Do It. Just Take The Morphine, And Learn To Live With It. It Is What They Do Not Tell You Thats Real Scary! Mary
Michelle W
02-05-2004, 05:54 PM
Mdla,
Have you had surgery before? I am thinking that you have or do I have you confused? I am wondering because I had arthroplasty in March 2003.
Have you had surgery before? I am thinking that you have or do I have you confused? I am wondering because I had arthroplasty in March 2003.