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TMJ Disorder -TemporoMandibular Joint Message Board
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Old 01-12-2003, 06:35 AM   #1
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Cymy Sue HB User
Post Surgery ....The longest post you've ever read

There are so many here in such terrible pain and looking for help, I just want to stress to you to be absolutely certain before you undergo any invasive procedure. There was little information available when I had surgical procedures, I was told I would be cured or in better condition, everytime. That has not been the case. My experience comes from:

1977 Wisdom teeth surgically extracted (they thought this was the problem) TMJS diagnosed after surgery.

1977-1992 Orthodontics & splints

6/88 Orthognathic (bilateral sagittal split-jaws broke) Pulled left condyle loose.

9/88 Orthognathic (bilateral sagittal split-jaws broke) Mouth wired together to prevent bones from moving.

1990 Extensive bone grafts due to low grade infection since surgery in 1988. (Incredible bone loss, my teeth were falling out.)

1991 First MRI showed only shreds of soft tissue hanging out of joint.

1992 Arthroplasty or Open joint to replace disc with ear cartilage. (They said NO SPLINT NEEDED EVER AGAIN)

1997 Arthroplasty to take out shredded ear cartilage.
No replacement. They said nothing was working for replacement.

Dumped in "Pain Management" due to unbearable pain from bone on bone condition, extensive nerve damage, scar tissue and severe muscle problems. Also, necrosis (dead bone) in the joint area causes incredible pain.
Necrosis due to multiple surgeries.

2001 Nasal surgery due to hypertrophic turbinates, caused by nerve damage from TMJD surgeries.

I have ear, eye, nasal, neck, back, and every other problem or symtom you have seen on any list. I also have irreversible nerve damage that can never be repaired.

5/02 I was turned down for complete joint replacements. I have too much damage from previous surgeries.

In case you are considering surgery and have not done any research or gotten far enough along in the system to be given information, here goes: (I never saw any of this or signed this type of release)

This is a Standard TMJ Pre-surgical handout found in any Surgeon's office and can be found on many public view websites.

SURGERY- is proposed to eliminate pain, popping, clicking, limited movement, etc.
HOWEVER- you must understand that you do not have a normal joint and you will never have a normal joint after surgery.
IF- you have surgery on one side, due to alterations you may have to have surgery in the future on the other side to achieve harmony in function.
YOUR DOCTOR- can not guarantee that you will stop having pain & hearing noise. Some degree of pain & noise may remain and in some cases become worse-this means more treatments and surgeries in the future.
OPEN-JOINT (arthronomy) usually requires 3-8 hours on each side.
SWELLING & bruising will most likely go away in several weeks, but could take up to 3 months or longer.
DECREASED mouth opening & inability to chew is normal for several weeks. You may be wired together due to unexpected breakage of bones.
BREATHING & nasal congestion, nosebleeds, sorethroat are not uncommon.
NAUSEA can be a real problem after these surgeries, call Nurse immediately.
PAIN & NUMBNESS- you may have altered sensations & numbness. Normal sensation should return by 6 months. There will be pain after any type of surgery on the TMJ's and you will be given medication.
DIET-eat whatever you can drink.
POST-SURGICAL depression is not uncommon.
BLEEDING- usually you will not need a transfusion, but due to the time involved in some of these surgeries, it is possible.
INFECTION-is possible.
SURGICAL DRAINS- will be left in place for about 24 hours.
ALTERED SPEECH- it will take you a while to be able to talk well, you have to practice. Keep a pad & pencil, be patient.
ORTHODONTICS or Splints will be required before, during and a while after you surgery.
PHYSICAL THERAPY- regaining adequate mouth movement after surgery will be difficult. Restoring almost normal jaw movement is dependent on you cooperation.
RETURN to work- you will be encouraged to return to work as soon as you feel well.
FUTURE TREATMENTS- These include medications, physical therapy, splint therapy, restorative denistry, orthodontics, jaw repositoning, future joint surgery, including grafts, implants, removal of grafts & total joint reconstruction.
IF MUSCLE SPASMS OR MYOFACIAL PAIN EXISTS IN YOUR CASE, THESE MUSCLE DISORDERS CAN NOT BE REPAIRED BY SURGERY.

I would like to make a couple of comments due to experience.
SWELLING- my head looked like a bowling ball for about 3 months after open joint surgery.
BONES do get broken & moved during these surgeries.
BREATHING PROBLEMS- I almost didn't make it due to swelling that began during the surgery.
NAUSEAU-is a major problem. If you're wired, they hand you a pair of wire cutters as soon as you wake up.
PAIN & NUMBNESS- I have been numb from the nose down for 15 years. Your surgeon will give you pain medicine maybe 2 weeks. Pray that he will refer you to "Pain Management" especially if you have any kind of disc work done. Some surgeons won't. They think you can live with it.
BLEEDING I had to have massive transfusions.
ORTHO & SPLINTS- I was told for 10 years I did not need this. (prior research says I needed to be in a splint during these surgeries)
PHYSICAL THERAPY- has always helped me, I've had a great PT.
RETURN TO WORK- I have not worked since 1991 because my face started to draw, I had long periods of not being able to talk and I had to take pain medication on & off. I was the Administrative Secretary for the Vice-President of a multi-state bank. It was a great job.

All of you that are not getting relief from splints, physical therapy, and other non-invasive treatments, please keep trying. There are still Surgeons out there that will do these surgeries and they know you are most likely to end up in splints, using physical therapy and pain management, "ANYWAY"

They do cover there own back ends. Here is a standard release form for TMJ Surgery. I think Elaine posted it, but it's so incredible, I thought it was worth a second look. This form can be found anywhere on the net and in all Surgical offices.

I understand that my condition of limited function, pain and joint noise, may be due to several causes including injury, articular displacement, developemental defect, degenerative joint disease, inflammation, arthritis, or infection. I realize that some of these conditions may continue in spite of the proposed procedure and that there may be no improvement and even worsening and that additional treatment may be necessary.
These are the complications and side effects (but not limited to):
1. Objectionable scarring, possibly requiring later revision.
2. Swelling, bruising, bleeding, blood clot formation, and wound infection.
3.Adverse or allergic reaction to medicine. Some serious.
4. Foreign body reaction.
5. Malocclussion ( change in bite after surgery)
6. Adhesions within the joint space which may cause further dysfunction and decreased range of motion and chewing difficuly.
7. Facial muscle weakness, usually temporary, can be permanent.
8. Sensory nerve damage. (Usually Trigeminal Nerves)
9. Ear problems, ringing, hearing loss, equilibrium problems.
10. Freye's Syndrome (facial sweating while eating due to nerve fiber damage)

I understand that additional treatment may be necessary including physical therapy, splint therapy, reconstructive denistry, orthodontics,jaw repositioning, joint replacements. bone grafts, removal of grafts, etc.

I understand this is a complex surgery and there can be no guarantee of complete resolution of my problems and there may be increased symtoms.

I authorize my Doctor to change the procedure during surgery as he sees fit according to his professional judgement.

I understand that there can be problems with anesthesia.

I have not been given any warranty or guarantee as to the result of the proposed procedure.

This is a brief description of the form, look it up.

Any of you that have gotten this far, please try everything you can before you possibly become a surgical TMJD (mistake) statistic.

Good luck to everyone,
Cymy Sue



[This message has been edited by Cymy Sue (edited 10-01-2003).]

 
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Old 01-12-2003, 08:28 PM   #2
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Elaine HB User
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Sue,
I saw a oral surgeon in Chicago, one I posted about in other posts. He was the one who told me to get this implant out and replace it with nothing. I seriously think a person can live without discs in the TMJ. Think about it. I had the Christensen fossa put in five years ago. The purpose of it was to stop my jaw joint from deteriorating. It has destroyed my condyle, I have arthritis, scar tissue, jaw deviation, limited opening, can't eat solid food, headaches etc. On the last report from my implanting OS, he wrote the implant has served its purpose and he "concurred" it needed to be removed as possibly the screws have loosened. I have yet to know what the purpose of the implant was since all it did was damage. These doctors try to scare us that bone against bone isn't good but how can metal(implant) against bone be any better??? Obviously it wasn't!!! I am in a world of hurt because of being convinced I couldn't live without a disc. As for pain relief from surgery, what a crock!!!
Who ever mentioned about "being a little too harsh on doctors"? My god, if that were the truth, it would be with good reason. Look what has happened to so many people. That part wouldn't be so bad if the $$$$$$$ would knock it off and quit doing this surgery when they know they are messing up so many lives! I have said before, greed and money, is what it all amounts to. Look at me, I need implant removal and with no insurance~~~~Suffer till you have the money up front. This is the great medical profession that is suppose to agree to "do no harm"...I am impressed.
Sorry to vent but this is like salt in an open wound and lately I have lots of them!!!
Take care,
Elaine

 
Old 01-12-2003, 09:28 PM   #3
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Elaine HB User
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Totally sickening but very true!!!


Pre-MEDitated Medical Malpractice on the Defenseless

What is wrong with the current medical/legal/government/law enforcement syndicates as they related to medical injury victims

"My Five Minutes"

I have been invited to give my "five-minute-opinion" about what is wrong with the current medical/legal/government/law enforcement syndicates as they related to medical injury victims so, here it is:

It comes down to something my grandfather James told me when I was about three: we were out walking and I saw a discarded toy on the sidewalk and stooped to pick it up. My grandfather told me not to touch it, that it belonged to someone else who had been playing with it there and would certainly come back for it later. I didn't see another child anywhere and couldn't envision the concept of ownership at that age and started to argue: "why did they leave it? where did they go? when will they come back? what is their name? why can't I play with it until they come back for it?"

Grandpa said something that stuck in my head forever: "All you need to know is that this toy doesn't belong to you. You don't need to know anything else, don't need to know who it belongs to, why they left it here, when they will come back and get it. All you need to know is that it is not yours and walk away unless you have permission of the rightful owner to use it."

My message today is one I learned easily at age three from my grandfather: "doctors, if it isn't yours, leave it alone unless you have permission from the rightful owner to use it. All you need to know is that it is not yours..."

Since I have five minutes, I will devote the rest of this message to everyone else and make you a list of the truths I came to know the hardest way possible. If I had known back in 1991 what I know today, known even one of these things, my personal tragedy might have been averted:

*When you are admitted to a hospital you are asked to sign a standard "hospital admission form" and are told something to the effect of "you need to sign this so that we can treat you". But do you understand what you have just signed?

Probably not. Few lay people have the experience necessary to accurately determine that they have just signed a legal document with the language of a "power of attorney" and have unwittingly signed their bodies over to the hospital to do with as the hospital staff deems fit. Whatever the hospital staff deems fit, whether it will benefit them personally or not.

What if, on that day, you have signed yourself into a teaching hospital and what they "deem fit" is meeting the credentialing quotas of the residents they are getting paid by the government to train? What if that particular hospital's first interest is meeting their contractual obligations to the government to procure "teaching material" for the operating room so each resident they have agreed to train can be provided with the correct number of surgery experiences required to get certified?

All teaching hospitals are not clearly labeled as such so it is not always easy to determine exactly what KIND of institution we have come to for our medical care needs.
This hospital admission form is the document that the patient has to be mindful of, more so than the "surgery consent form" or the "procedure consent form" we are brought to sign after admission. The admission form was signed first and everything signed after, while you are still under their roof, is secondary to it.

If you do not listen to anything else I have to say except this one thing, know that it is this one thing that causes the most trouble when we are injured and seeking justice later. This document is the foundation upon which the case is built against us in Court: "well, you signed that admission form, didn't you?"

Facts are, if a person signing a contract was not made aware of ALL the terms of that contract before signing the contract it automatically becomes null and void.

Were you told clearly that your surgery was actually going to be performed by a resident trainee instead of the already-trained, experienced surgeon you'd consulted? Or that once anesthetized groups of medical students were going to be invited into the operating room to line up and practice pelvic and rectal exams on you without your prior knowledge or consent, one after the other? No? Then you were not made aware of ALL the terms of the contract you'd just signed and it is rendered null and void.

*Whether we are aware of it or not, we have ALL been secretly divided into one of two stratifications: "high priority" and "low priority". We all have a label attached to us, regarding our stratification assignment, on our computer file in a centralized computer database. This database is accessible to authorized personnel only--- all over the world. The operator uses our NAME, BIRTHDATE, and SOCIAL SECURITY NUMBER to call up our file. (please note that the Social Security number is not to be used by any other entity but the Social Security Administration for identification purposes; that the medical syndicate has been allowed to get away with this is very interesting)

Each stratification has its own set of protocols attached to it regarding what will be offered in medical care and what will not---wherever we go.

The "high priority" stratification gets the best care available: the most effective prescriptions regardless of cost, effective pain control, organ transplants, and so on. They do not have the burden of being used for resident surgery training, device testing, or any of the other violations reserved exclusively for those who carry the "low priority" tag.

New surgical procedures, drugs, devices, implants and so on are tested on the "low priority" stratification and if these new things prove useful and worthwhile, they are offered to those on the "high priority" list---after all the "bugs" have been worked out on the "low priority" people.

"Low priority" people are organ donors, never recipients---unless there is an experiment going on and human guinea pigs are needed. They are used for student surgery training, drug and device testing, medical student's "pelvic
exam practice" without informed consent when laid out on the operating room table anesthetized for surgery, and any other risky or painful thing the medical syndicate requires for its own purposes. When the teaching hospitals have surgery resident's training/credentialing quotas to meet a call goes out to family practitioners offices and the Emergency Room doctors to send in referrals---from the "low priority" stratification, always.

Who are labeled "low priority"? The elderly retired. Housewives. Single over the age of twenty-five. People with no dependents. Terminal with other disease. In short, anyone who has a relatively small monetary value on the scale medical malpractice attorneys use to calculate monetary losses and "damages".

Attorneys will only accept medical malpractice cases where they are assured of getting a great big financial return for themselves (not for you; they have no interest in you)---a return that is based on monetary losses to the victim: "What are the damages?"

"Damages" calculated for the groups mentioned are so low attorneys will not accept medical malpractice cases brought in by these particular people no matter how meritorious the claim itself might be. This selection process has nothing to do with truth, merit or justice---the attorneys are interested only in monetary returns to themselves.

In a civil court, only monetary returns are offered; medical malpractice cases are traditionally filed in civil courts.

What you and I are not supposed to know, but the medical syndicate knows well, is that the elderly retired, housewives, single over the age of twenty-five, people with no dependents, terminal with other disease groups are essentially "free kills". Anything at all can be done, and IS done, to these people in these particular groups with no accountability whatsoever.

If you fit one or more of these categories you'd better "watch your backs" whenever you have an encounter of any sort with the medical syndicate; there is nobody policing that system and if you don't look out for yourself and take preventative action nobody else will, before or after injury occurs, then it is too late.

*Attorneys are "Officers of the Court", take a loyalty oath to that effect. You will be paying their fees but they will NEVER be working for YOU; their first loyalty is to the Judicial branch of the government. And government is not going to go after government, has secret "sovereign immunity" protocols in place to protect the government-funded residents and the hospital teaching programs from consequences and rightful prosecution of medical injury victim's valid claims.

*One of the tools used to oppress and discourage medical malpractice victims from seeking and getting relief through the Courts is something called a "Certificate of Merit" law, which is being challenged in some states as unConstitutional in that it allows the perpetrators themselves the exclusive right to decide which cases are going to be allowed into the Court system,
and which are not---even before the cases are filed! If the medical syndicate doesn't want certain kinds of cases recorded "on the books" and resolved in the Courts all they have to do is filter the most embarrassing or most criminal ones out of the system entirely before they can be filed at all! The "merit" of all cases with a monetary value of over $25. are for JURIES to decide in a Courtroom. That is what our Constitution says.

*Another oppression used to discourage and control medical malpractice victims are "Statute of Repose" laws that say after a set period of time passes no case can be filed. The law incentives this widespread, criminal action by the medical syndicate: when an iatrogenic injury occurs the medical community "sees nothing" for the whole time the state's Statute of Repose is in effect, which in many states is seven years.

The injury will be deliberately left untreated for seven whole years, will get no active response and will remain unrecorded no matter what manifests. Nothing will be done to halt progression of the injury. Care is limited to a sociopathically inhumane "symptomatic relief only/noactive intervention" protocol and the doctors will not be moved from this rule no matter what you say or do.

The victim will be hung in limbo until the very day that Statute of Repose expires. Whatever is left standing on that day gets immediate action: the doctors who "saw nothing" for seven long and painful years "spring to life" suddenly, the "selective blindness" lifts, and the truth is told. Whatever care can be offered is offered---if the victim is still alive. Staying alive untreated is the trick, especially if you are not told what your injury is early in their "game" so that you can take proper action in your own behalf through alternative medicine while you "wait" for your Statute of Repose to expire. People are being deliberately "waited to death" every day, all over this country.

If, when the Statute of Repose expires and you have been allowed to deteriorate untreated to the point of no return, and nothing can be done to reverse the damage the doctor-caused injury has created, you will be given a fake "cancer" diagnosis, allowed palliative care, and fast-tracked to your grave.

*If you are tagged "low priority" and come down with an expensive, prolonged illness which makes you a financial liability to your health insurer you will be fast-tracked to the grave to save money. Remember all those odd stories that have come out in the news regularly where some doctor, respiratory therapist, or nurse was accused or caught in the act of killing patients in hospitals, nursing homes, or veteran's hospitals? Well, it is just plain cheaper for the health insurers to place and pay these killers to get rid of the policyholders who turn into financial liabilities than to allow the expensive, prolonged illness cases to continue after a diagnosis is made and they are locked in to providing proper care forever. For all these stories that made it into the news at all there are thousands that didn't. This goes on every day all over this country, right underneath all our noses but we don't understand what we are actually witnessing.

*Referring doctors who send their patients to the teaching hospital's training program to be used by their government-funded students to practice on gets paid a "finder's fee". Call it a kick-back, bonus, graft,
whatever-you-will--- "low priority" lives are being bought and sold every day.

Patients are being lied to and scammed into undergoing surgeries they do not really need in order to meet the needs of the teaching hospital's resident training programs. Some hospitals are so aggressive in snaring "training material" that their ER doctors are admitting people directly from the ER "for observation" then offering surgery after admission; if the target refuses surgery they are lied to and told if they don't go through with what has been recommended the doctors will not sign them out of the hospital---and if they leave without being formally released their insurers will not pay the bill.

Parents of minor children are being falsely accused of "child abuse" or "Munchausen-Syndrome-By- Proxy" and their parental rights terminated, when malpractice happens to their child, or when medical experiments requiring children are being performed. Parents are denied access to the child so that the parents cannot witness what is actually going on, being done to that child.

*There is a centralized computer database where all of our clean, unaltered medical records are kept that is accessible only by people who have terminals and know the proper passwords for each level of access. If you ask for copies of your medical records you will never be allowed to have what is kept in this computer database, you will be given a copy of the sanitized paper file kept in the fileroom. Hospital x-ray filerooms keep two envelopes of your x-rays: a sanitized one and a "clean" one labeled "for doctors only" and tagged with a call-number---no name. You will be allowed access only to the sanitized x-ray file.

*The medical profession is not what you have been led to believe it is. (neither is the legal profession and government entities for that matter, but that is another story...) There have been vast changes in the character and quality of the medical system due to the introduction and spread of "managed care". The insurance companies have taken over and now control doctors through income, sit directly in the middle of the doctor-patient relationship and decides who gets what based on cost.

They've bought up the hospitals, made their plan doctors stockholders and invented other "incentives and rewards" to justify what amounts to murder of their policyholders to boost profits. They also decide who gets what based on profit too. One of the ways the insurers and their stockholders can make money off their policyholders is to use them for training surgery and allowing experimentation in the teaching hospitals they have bought up. Private companies pay good money to test medical devices, drugs, equipment and so on. But the government pays out about seven billion dollars a year in Medicare funds to teaching hospitals to train residents. The teaching hospitals have so many student slots to fill and and training students is so lucrative an enterprise that if enough American medical students cannot be recruited these slots will be filled with foreign students; Medicare pays for that too.

Training students brings money into the company; paying for proper medical care for policyholders takes money out of the company. It doesn't take a rocket scientist to figure out who is going to end up on the short end of things when money is the motivator.

Medical CRIME is rampant in this country. It is rampant because the protection laws on the books are only as good as the ones enforcing them---and there is no real law enforcement. Justice (just-US) is reserved exclusively for those who can afford to BUY it.

There is nobody standing up to make sure these kinds of human-rights abuses are not allowed to occur in the first place. And no place to take a violation for proper resolution after-the-fact.

What we have now is a medical syndicate who knows it can do absolutely
anything to anyone and get away with it. Even murder, torture, and rob.

That is where we are at today.


 
Old 01-13-2003, 03:05 AM   #4
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Hi Elaine,
Glad you're back. I'm glad I'm not the only one who sees "The American Medical Mess". It's not the best "club" to be in, and I hate we're in it, but it scares the &*&*%$ out of me.


This is an excellent post and very acccurate from where I've been sitting. Keep the information coming.

I'm living proof that you can live without disc. It takes longer for the surgical pain to go away, but you don't have to go back to get "the replacements" out when they fail. If my Surgeon had followed proper protocol in 1992 and told me I would need a splint to support the grafts, they might have lasted longer. In 1997 when the grafts were removed, If he had "THEN" told me I needed a splint to support my joints and keep the muscles in position, I think I would have fared a lot better. My tinnitus, nasal problems, and eye problems have just started in the last 2 years. All confirmed to be due to advanced TMJD, accelerated by surgical damage. I'm also having some kind of weird apnea that my ENT thinks is TMJD related.
IT NEVER ENDS!!!!!!!!!

(I may be on my soapbox for a while, any company would be appreciated.)

Again, Welcome back, We missed you,

Cymy Sue

[This message has been edited by Cymy Sue (edited 01-13-2003).]

 
Old 07-07-2003, 03:32 AM   #5
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Bumped for new Member (mdla) with surgery questions.
Sorry this sounds pretty terrible, but it is very real........And I'm doing well compared to some of our members.


Cymy Sue

[This message has been edited by Cymy Sue (edited 07-07-2003).]

 
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