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To Cut or Not to Cut?

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Old 09-22-2003, 09:28 PM   #1
Join Date: Nov 2000
Location: Montana
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Elaine HB User
Post To Cut or Not to Cut?

Deciding whether a surgical operation recommended by your doctor is right for you

Are surgeons too quick to put patients under the knife? That's an important question for anyone considering a coronary bypass, hysterectomy, prostate removal, or a long list of other common elective operations. Studies recently released by researchers show tremendous "unwarranted variations" in the numbers of invasive procedures performed in the U.S. In other words, the likelihood of your having surgery depends more on the doctor you see than whether you really need an operation.
Avoiding unnecessary surgery requires a proactive patient willing to challenge opinions and research options. "One of the biggest problems with our health-care system is that patients are way too passive".

Doctors have biases that may conflict with your best interest. A urologist is more inclined to recommend surgery for prostate cancer, while a radiotherapist is likely to tell you to have radiation. An orthopedic surgeon will lean toward back surgery for disk compression, while a sports medicine doctor will more often advise physical therapy. A oral surgeon will lean towards TMJ surgery, while a dentist will lean towards conservative measures.

"The system does not reward doctors for talking. It rewards them for doing,"

GET MULTIPLE OPINIONS. With this in mind, never accept one doctor's word that you need an invasive procedure. Be especially wary if it's one of the "big-ticket" operations that insurance investigators and patient advocates say are overdone.
Get a second, third, or even fourth opinion. Most insurance companies cover and encourage multiple consultations. Any doctor who takes offense that you want to seek another's advice is not truly concerned for your welfare. Also, don't pester your doctor into more aggressive treatment. Be careful what you ask for because you'll likely get it whether you need it or not.

EDUCATE YOURSELF. Make sure you obtain opinions from different kinds of relevant specialists, and don't go to doctors who are professionally associated with the doctor you saw first. If possible, consult with doctors at the nearest teaching hospital. As academic institutions, they're at the forefront of medical research. Also, the doctors there are more often salaried rather than paid by the procedure, so they don't have a financial interest in your surgery. Since physicians are usually loath to contradict each other, give only your medical history and test results. Don't divulge your diagnosis or the treatment recommendation you already have. That way you won't prejudice the consulting doctor's judgment. "Ideally, you want to get at least three doctors in agreement on what needs to be done".

You also want to educate yourself about your condition so you know your options and can question your doctor intelligently. Don't rely on the ubiquitous pamphlets offered at medical offices which are essentially marketing brochures. Get on the Internet, where you can find some helpful new resources.
For example, a section on carpal tunnel surgery tells you the preliminary diagnostic tests you should have. It also gives a detailed description and animated depiction of the operation. In addition to the success rate and possible complications, you'll learn that thyroid dysfunction can often cause carpal tunnel syndrome, in which case it may be resolved with medication.

Medical school libraries are another valuable resource because they can give you access to the latest research on surgical outcomes and alternatives. Many medical libraries now have consumer sections with librarians devoted to helping the general public find information.

Most surgeries are discretionary -- meaning they're at your discretion, not your doctor's. You may decide that the benefits of an invasive procedure outweigh the risks and are preferable to more conservative treatments. But it should be your informed decision. Find out what the potential complications are, and think about what's best for your body, your mind-set, and your lifestyle. The kindest cut may be no cut at all.

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Old 09-23-2003, 02:07 AM   #2
Cymy Sue
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This is a very informative post and you've made it at a time when it seems to me there has been an increase in surgeries, especially in Oral Surgery for TMJD.

Many may think that I make these posts about the dangers and risks of some of these procedures, because I'm angry that they didn't work for me. I am not.
When I had some of these procedures going back over 16 years, Surgeons believed they could cure the "TMJD Condition" with surgical techniques.

Many have learned with time and failures that invading the joint or using Orthognathic techniques does not cure this condition. Many Surgeons will not do these procedures for TMJ Dysfunction "alone" any more.
My first Surgeon and I remain friends. He quit "Operating" on the TM Joint many years ago. He says the Techniques of the Procedures "DON'T WORK". He said in Theory, Research and Trials, these procedures should correct the problems and help TMJ Dysfunction. He said after several years of doing these Surgeries, very few TM Joints respond as the Theories predicted. He is a very dedicated and an extremely good surgeon. He is well known and could have gotten very rich in the late 80's and early 90's. Instead, he quit the TMJ Surgery Business and will tell anyone who asks, the Techniques are flawed. Many would say he didn't know what he was doing. He did these procedures as expertly as anyone, maybe better. He saw very quickly the complications and risks, even when doing everything to the letter. He was one of the first that I know of who would not use the Vitek or other Implants of this nature. I ask for them and he told me he didn't believe these implants would hold up in the joint.

I could think possibly, that he might have quit because of failures and damage to the patients.

He is not the only Surgeon who has this opinion.

My last two Surgeons also, will only do some of these surgeries in the worst of cases and they will tell you (now) you may have better function, but the pain may get worse and the risks of the procedures. One is the Head of Oral Surgery at a large Univ./Medical Center Complex that is well known for Research and for some of the Surgical Procedures that are done there.

I have to believe these Surgeons who have stopped doing these procedures on the TM Joint have good reason. My last Surgeon who is an expert with the Arthroscopic/Arthroplastic Procedures will tell you that one procedure in most cases will not be the last. Many people end up with multiple procedures and at some point, they "Can Not" go into the joint anymore.

In the last 16 years I have consulted with 5 very good and well-known Surgeons, several times. They have advised, (in the last 8 years or so), that Surgery alone will not not cure TMJD. They can restructure abnormal bone and resuture disc or remove them, but you will still have to use other methods for Muscle problems, Pain and other Symtoms.

Before that, they thought it worked. They have learned from experience, Surgery does not cure TMJD.
It may alleviate all or some symtoms for a while, but in the majority of cases (not all). The procedures in many cases have to be re-done.

This is not just my opinion or the opinions of a few Doctors.

The "Surgery Consent Forms" for Oral or Joint Surgery does tell you that more surgeries or other types of treatments will, in many cases, most likely be required.

These Consent Forms, "SCREAM" that these procedures "WILL NOT CURE TMJD" and many times will add to your problems, pain and symtoms.

I wish these "Forms" with this information had been available several years ago. I think I would have taken them very seriously and made different decisions. Many of us did not know these things and have lived with these "Possible" complications and damages for years.

Elaine, I'm sorry to get on my "Surgery Soap Box" again. I wouldn't wish the misery my life has been the last 16 years on my worst enemy. I know You, Donna, Sharri and all the others, whose "Surgical Experiences for TMJD" have been much worse than mine, wouldn't either.

Cymy Sue

[This message has been edited by Cymy Sue (edited 09-24-2003).]

Old 09-24-2003, 12:22 PM   #3
Join Date: Nov 2000
Location: Montana
Posts: 407
Elaine HB User

Cymy Sue,
Like many others, I learned the hard way, that surgery does not cure pain. So many people wonder why I had surgery to begin with. It was for a displaced disc and headaches. My opening was normal, no jaw deviation, I could eat most anything. I had clicking but I can't say I had pain with the clicking, just the horrible headaches.
Surgery #1 put the disc back in place. No pain improvement. Ear pain, jaw pain, neck pain, added to headaches.
Surgery #2- two years later to remove scar tissue that had closed me down.
Surgery #3- Seven years later. I was having severe puking headaches,(still do) that part hasn't changed. Removed excessive scar tissue, along with the disc(disc was tied up in scar tissue) and implanted with Christensen fossa. Now they say I have all the symptoms that the screws are loose with the implant. Anyone who thinks one surgery will be the only one, is going to be mighty disappointed. Surgery should never be done for pain relief only, it isn't going to happen. The nerves and muscles that are cut during surgery provide temporary relief. When they grow back, be ready for the definition of "real pain"!!
I know we are on here trying to tell our experiences and save people from a life of hell but I wonder how many really listen. It breaks my heart everytime I see a post, "I am having surgery". Granted a "few" need it but most times, NOT!!! I read one post, "you make it hard to be a success story". I thought to myself, with this surgery, it is hard to BE a success story. There are a few but few and far between.
Take care,

Old 09-26-2003, 04:33 PM   #4
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Luigi12 HB User
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Elaine and CymySue,
I have to add my voice to the wisdom you both expound. My 25+ surgeries and other procedures over 23 years have also convinced me and my current surgeon that surgery is not a cure for TMJD--and he also refuses to continue that particular part of his practice. The only thing that can be done for me surgically is debriding or removing the bone growth and/or tumors caused by the proplast and/or Silastic used in 1981 and 1982 in my left jaw. But there is no chance that surgery will cure the active giant cells that still float around in there and cause havoc constantly. Would that I had never consulted with a surgeon in the first place. I think at that time there were many who really thought they could help. Now its been proven many times over that it generally doesn't (except in the case of traumatic injury, of course). What I wouldn't give to have a mandible and a condyl back. And not have a temporal bone twice the normal size and weight. Or a tumor on the skull floor. So, yep, I agree with both of you.
Take care.
Donna Y.

Old 09-26-2003, 09:52 PM   #5
Join Date: Nov 2000
Location: Montana
Posts: 407
Elaine HB User

I consider myself lucky, I wasn't in the proplast or silastic era! I think about the ones who I know, that are dealing with the problems caused by those implants. It is just unimaginable what they/you are going through. I find it unbelievable what I am going through but I know it doesn't even begin to compare to the proplast implants. I hope things are not too bad with you, although I know they are not good...
Take care,

[This message has been edited by Elaine (edited 09-27-2003).]

Old 10-01-2003, 08:20 AM   #6
Cymy Sue
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Old 10-07-2003, 02:36 AM   #7
Cymy Sue
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Post for Zach

Old 10-08-2003, 08:40 AM   #8
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Djin HB User

I had an appointment with my dentist again yesterday. He checked my joints and said they're fine (!!). I've noticed the clicking and stuff have gotten much better with physical therapy. The muscular issue is a whole other ball of wax. Due to the way my teeth fit together (or, more specifically, DON'T fit together), it puts tons of strain on my muscles and back teeth. That's what orthodontics/orthognathic is being suggested for, NOT tmj. I'm still very wary of the idea, though, and I'm doing a lot of research.

I was very glad to hear my dentist say that if it were an actual joint problem, he wouldn't recommend ANYthing, but would instead send me to a specialist. Good to know that he knows when NOT to treat someone.

He also told me that the orthodontist who recommended this surgery originally is VERY conservative about who he recommends it to. He told me that there are some doctors in town who, if I had told them they said I should have the surgery, he would say I should look into other options. But that he has so much confidence in my orthodontist makes me feel a little better. Now all four of my doctors (dentist, oral surgeon, orthodontist, and physical therapist...none of them are in the same practice, or anything. They just know of eachother) agree that it's the best solution. I still have not agreed to it 100%. I'm getting a splint later this month, so we'll see how that works. I may put it off, I may go ahead with the orthodontics later this year. It remains to be seen. (Also, insurance has a lot to do with it, as there is NO way I could pay for all this myself. My doctors are going to deal with that to see what they can find out).

So, while I agree that surgery for tmj sounds like one of the worst things you can do, surgery for other reasons, like to align the bite, sound ok to me. Of course I will do more research beforehand.

Thanks, everyone, for sharing your experiences. Suffice it to say, YES, some of us out here DO listen! I'm certainly being much more cautious!
If the stars are aligned against you, realign the stars.

Old 10-08-2003, 09:28 AM   #9
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velvetgrl HB User

Hi Djin,

I just ran across your post. Are your doctors speaking of jaw surgery and then braces for you to align your bite?

That's what was recommended to me by an orthodontist. Apparently, according to him, that was the only way to correct my bite. I'm not sure what your situation is, but, for me, I have no facial problems/deformities and I have absolutely no problems with breathing through my nose ...none of the things that jaw surgery is thought to be necessary for. I am overclosed and have what the orthodontist calls a Class II, division I, off a tooth, bite. Well, I wasn't going to have jaw surgery at 48 years old, when my TMJ problems just started less than 2 years ago. Since then I've talked to other specialists who do not feel I need jaw surgery to correct my bite. I am in a repositioning splint to change my bite (and help my tmj) and then I am going to get dental work to correct the bite. I'm not sure what exactly your situation is, but, I can tell you that in this day and age there are other ways to fix a bite. Oh, another dentist even said he knows of someone that could correct my bite with braces. That surprised me because I was told I couldn't get braces without jaw surgery. Also, if you are having muscle pain, I wouldn't think surgery would be the cure all for that. Please check out other opinions. I am seeing a neuromuscular dentist, but, there are many others that treat TMJ successfully too. Best of luck to you!


Old 12-10-2003, 04:15 AM   #10
Cymy Sue
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Re: To Cut or Not to Cut?

It seems we have several members recently, who have been told a very non-invasive scope procedure could help with their TMJ problems and pain.
I always feel it's important for everyone to know, from those who have had these procedures, to investigate and research everything about the particular procedure that you are being told you need.

Some of us who have posted on this thread, are older and had surgeries going back to the 80's. We had decided at one time, we were the "Lab Rats" and possibly the failures we suffered would indeed help people in the future. I'm not so sure about that now.
There are currently many younger members in the group who have had procedures recently and it seems they have not fared much better.

I would never tell anyone "NOT" to have a surgery that could possibly help them. I will tell you to please be certain that you have tried everything else possible and that the procedure being discussed is truly one that can help.

I see a trend of terrible frustration among our members with non-invasive therapies not working and in some cases, seemingly making conditions worse.

I have also seen Doctors in frustration, when it seems nothing is working and they don't know what else to do, refer patients to surgeons.
Some surgeons still do these procedures (daily) for TMJD in spite of statistics, case histories and current research confirming many failures and the possibility of continuing symtoms and the need for future treatment.

Many surgeons have realized the potential for failure and only do these procedures infrequently on patients who meet certain criteria.

I don't have the answer. I wish I did. I do have experience and want to tell everyone considering a surgical alternative to get several opinions. Don't submit to a surgery that could very well make your condition worse because the provider you are seeing has "run out of idea's".

Find someone who has more experience and knowledge in treating TMJD. I know it's tiring, frustrating, costly and you are worn out. I've been there, too. But believe me, it can be worse.

Many of us have searched for years for the right treatment or therapy ,as many of the younger & newer members are doing now. Finally, coming to the decision and certainty that there were no Dentists, Ortho's, or anyone who knew what to do for us and concluding that the treatments and therapies used were not working and we had to do something. We turned to surgery and found out, Surgeons did not know anymore about treating or curing the condition than anyone else. The difference is, you can take a splint out or stop PT, MT, or the other numerous treatments that we have all tried.......
Whatever is done to you Surgically "CAN NOT" be fixed or undone, if the procedure fails or if there is unintended damage.

You would think that in the past 20 years or so, these procedures would have become routine and they would have made adjustments in regard to failed or flawed techniques and perfected better and more accurate ways of repairing damaged joints.

They have not. The Surgeons can do the procedures perfectly with no mistakes or errors and the patient will still have TM joint and/or muscular problems.

It's not hopeless. There are Providers who do understand the joint, the muscular problems, the dysfunctions, the symtoms and can treat this disorder.
They are hard to find. In reading many posts, it seems that many are being over treated. So much done to very sensitive tissue and already spasming and aggravated muscles. On the other hand, others unable to find help at all.

Finding a Provider who can treat effectively with as little intervention as possible and a simplistic approach to relieving muscle problems and other symtoms does work for many people, myself included.

My hope & prayer for all is to find this type of treatment.
Cymy Sue

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