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Old 09-27-2004, 11:01 AM   #1
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juulie HB User
To those who say "don't have surgery"

My TMJ doctor (very well respected) says he has exhausted all possible treatment options for a displaced disc and now wants me to seek a surgical opinion. I live with severe pain everyday and it is taking its toll on my physically, mentally and emotionally. I know many say "don't have surgery", but what else I am supposed to do? How long can one tolerate pain? Do I just suck it up and hope that one day the pain is gone? I understand that surgery is risky, but I'm trying to understand what other options there are. Comments welcome, thanks.

 
Old 09-27-2004, 01:07 PM   #2
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saaraah HB User
Re: To those who say "don't have surgery"

Quote:
Originally Posted by juulie
How long can one tolerate pain? Do I just suck it up and hope that one day the pain is gone? I understand that surgery is risky, but I'm trying to understand what other options there are.
i guess you have to weigh the possible risks/benefits. it's impossible to say whether you will get better or worse with regards to pain and function. i suppose all you can do is educate yourself on the efficacy of the type of surgery that is suggested for you.

personally, i have made the decision to never have surgery because i dont feel that it's the answer for my problems, and im too scared for having worse pain. however, i absolutely dread the thought of living the rest of my life [60 years or so] with the type of pain and dysfunction i have right now.

in my experience, everytime ive failed a therapy -- like right now -- and believe that there's nothing else to do, i have found another conservative treatment. perhaps it's time for you to find a new health professional who hasnt exhaused his/her options.

i wish you well, and hope that you make the decision that is right for *you*.

take care,

- saaraah.

 
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Old 09-28-2004, 05:20 AM   #3
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Re: To those who say "don't have surgery"

I have had several surgeries with good outcomes, and believe it was the right choice for me. No one can tell what the right choice is for you. If you have exhausted the other options, I don't think you can speak in absolutes (never have surgery, etc.).

I have posted this to you before, but I want to emphasize, if you do have surgery, pick your surgeon VERY carefully. Be willing to travel or pay out of pocket if necessary. This will be one of the biggest decisions of your life, and you only get one shot to make the right one.

A lot of people post here who have had poor surgical outcomes. It is interesting to me that many of them write that their surgeons "only do a few surgeries a year," or "hadn't done my type of surgery before." I don't think this is a coincidence.

Find someone experienced and choose carefully. You say your TMJ doc is well respected, that's good, hopefully he can recommend someone.

Also, you say you are having severe pain everyday? What are you doing to get the pain treated and under control? Even if you decide on surgery, it could take several months to schedule, you need to be getting adequate pain control in the meantime.

Good luck in whatever you decide.

 
Old 09-29-2004, 03:18 AM   #4
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Cymy Sue HB User
Re: To those who say "don't have surgery"

Hi juulie,
Sometimes when we feel we have no other options, especially if we have been seeing one Doctor or Specialist for a while, we can be wrong. They can be wrong.
There could be options with someone else. I listened to a Surgeon for over 10 years regarding my condition. He is a wonderful surgeon, but did not believe splint therapy would help with post-surgical problems. He was wrong.
With a splint designed for my particular condition, after over 25 years of treatment and surgeries for TMJD, my life is back to normal.

Most people who come to this board and warn of the problems that occur with surgery are not trying to put Surgeons out of business. They are trying to tell anyone considering surgery to look at the statistics, read the literature regarding surgery on the TM joints and be "AWARE" of the risks involved.

There are many treatments for TMJ and many theories on what will help or work. With most, you can stop if it is not helping and seek help elsewhere. With surgical alteration, there is no going back.

I guess we all look at success differently. In reading the posts on this thread, we have one member who has had "several", is still in pain and believes it was worth it.
One who had "several" with good outcomes and now has Implants or a Total Prosthesis (?) and is happy with this. That's wonderful.

I had "several", all with excellent surgeons and up unitil 2 years ago was condemned to a life of staying highly medicated due to the pain and dysfunction.
There are many other's here who have had "several" and have not found any help with post-surgical problems and have been left "absolutely" without other options. The ones I know, did have good surgeons who were doing many procedures.

The facts about TM Joint surgery are very real. There are many risks and possible complications. Read a consent form. All of these risks and complications are very real and they do happen. If they didn't, the Doctors would not require this "consent" to perform these procedures.

Also, you may have noticed, the people who find these support groups have rarely had just one procedure. They have had several, all taking a toll on their minds and body. Some people do go on to Implants or Prosthesis. This seems to work well for some and not so well for others.
I always thought that would be an option for me when I could no longer handle my situation. Not so. Read the criteria for proper Patient selection for Implants to be successful.
They are not recommended after multiple surgeries or for heavy bruxers.
I was turned down for Implants due to multiple surgeries, bone loss, nerve damage and other reasons due to having "several" prior surgeries.
I'm very glad I was. A couple of months later, I found help elsewhere.
I am living with basically no real "joint function" at all and with a splint for support, no pain and good function. Getting to this point was living in total misery for most of my life. I thought I had suffered pain as bad as it could possibly get......until I started with surgeries. It can get worse.

The opinions on TM joint surgeries change as often as the weather. Joint procedures have been adapted from surgeries that work well on larger joints such as the knee and hip. It has been proven over and over, these procedures do not work so well on the TM Joint. It is a very different joint. There are millions of sensitive nerves in the area to be invaded. The incidence of nerve damage is very high and common. The consensus of an honest surgeon is, a procedure on the TM Joints is 50/50. They never really know how each person willl respond or how your joints will react to being invaded until it is done.

Many of the procedures that have been done in the last 10 years are not being done so readily at this point by some very well known surgeons. Some that they thought would work, did not, such as grafts. (cartilage or soft tissue replacement.) Nothing holds up in the TM joint as a replacement for the articular disc. Some Surgeons still do this procedure knowing that most fail within 2-5 years.
Sometimes the Arthroscope procedures do seem to work, only later the patient ends up with adhesions and scarring from invasion of the joint. This usually requires another procedure.
That's the reason that most of us have had several. Rarely does it end with one and many people get to a point where they can not continue to have more.
I am a rarity within these groups. I started with surgeries in 1988 and in 2002, finally found help and relief with a splint. It does not always turn out that way.

For those who have had good outcomes, it is wonderful. For those of us who did not, life can be very hard with NO other options and NO hope for relief.
When you hear anyone say , "Don't have surgery" they are not saying this to keep you from finding help. They are saying this to keep you from making the mistakes they feel they made in agreeing to surgical procedures that have no guarantees and have a great possiblity of causing you to be worse than you can imagine.
My message is to "Be Aware". Most good, honest surgeons will not make any promises with these procedures and if you find one who does, run.

My experience,
Diagnosed 1977 with TMJ Syndrome. I was 25.
Splints and braces until 1988.
2 Orthognathic procedures 1988. Failed. Left condyle permanently dislocated. Permanent nerve and muscle damage. Had all of the complications and almost died with both.
Extensive mandibular bone grafts 1989, due to infection from surgeries in 1988.
1989, First MRI revealed abnormal joint structure and shredded disc.
Arthroplasty (open joint) cartilage replacements, bone smoothing, 1992. Failed in 2 years.
Arthroplasty (open joint) discectomy, condular bone sanding & smoothing with no replacements 1997. Left in incredible pain and dysfunction.
Refused Implants in 2002 due to prior damage.
Misery ended with splint therapy a few months later.
I am told by someone I trust, the discectomy was needed due to dislocated, shredded disc. That was all that was needed. I am doing well now. 25 years of my life is gone and was spent in pain and hoping for good outcomes.

Always look for non-invasive options until there are "absolutely" none left.

Cymy Sue

 
Old 09-29-2004, 08:38 AM   #5
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juulie HB User
Re: To those who say "don't have surgery"

Thanks to everyone who responded to my post. I have an appointment with two surgeons for a consultation. One is local and one I will have to travel for. I'm not making any decisions to have surgery yet, I just want to see what they have to say. I'm not even sure what type I might need to have. I do feel that I've exhausted all treatment options, but not sure I want surgery, either. This is a tough one to deal with, either way sounds like a loser. I have a displaced disc without reduction and my TMJ doc seems to think that the disc is in good shape and can be pulled back into place, then sutured. He called this a discopexy, but I've never seen anyone use this term before. He said this is less risky than an implant. Anyway, he is not a surgeon so I guess the surgeons have to make their own recommendations. Analong2000, I do have pain medication to deal with the pain, but hate to keep taking it.

 
Old 09-29-2004, 10:37 PM   #6
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Arleen HB User
Re: To those who say "don't have surgery"

Hi Julie:

I haven't gone the surgery route, but have two displaced discs. They aren't causing problems, may never got back into place and I've been told that I can function without them. The body will eventually create pseudo-discs.

Beyond that, I believe there have been people on this board who've had their discs sutured into place. If I recall correctly, the discs have ended up displaced again, because the muscles rule and are so forceful, they end up moving the discs out of place. Perhaps if you if start a thread topic on who's had their discs sutured into place, you'll get some helpful responses.

Sometimes with tmjd, unfortunately, it's a matter of trying and trying and trying again. If a first or 2nd or 3rd splint doesn't work, that doesn't mean somewhere done the line you won't find a dentist and splint that perfectly fit your needs - as Cymy did - and that makes all the difference.

Good luck with whatever you decide.

Arleen
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Arleen

 
Old 09-30-2004, 05:01 PM   #7
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TiffanyAnn HB User
Re: To those who say "don't have surgery"

Quote:
Originally Posted by juulie
My TMJ doctor (very well respected) says he has exhausted all possible treatment options for a displaced disc and now wants me to seek a surgical opinion. I live with severe pain everyday and it is taking its toll on my physically, mentally and emotionally. I know many say "don't have surgery", but what else I am supposed to do? How long can one tolerate pain? Do I just suck it up and hope that one day the pain is gone? I understand that surgery is risky, but I'm trying to understand what other options there are. Comments welcome, thanks.
There is something to think about Atibbert had 4 surgeries and is still in PAIN so if you are considering surgery to get out of pain I think you are making a huge mistake. Of course you have to decide but I have yet to meet ONE SINGLE person who had surgery who is now out of pain. I have on the other hand met several who are in MORE pain than they were in before forking out $15,000. You should think long and hard before undergoing surgery. Every surgeon will tell you how successful their surgeries are. If they didn't nobody would undergo surgery. Give it serious thought.
Tiffany

 
Old 10-07-2004, 08:35 AM   #8
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SuzannaR HB User
Re: To those who say "don't have surgery"

Repositioning splint therapy for a year worked for me. Although the joint only went back to about 85% of functioning, I thought it was still better than going for surgery.

 
Old 10-15-2006, 02:56 AM   #9
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ranosb HB User
Talking SuzannaR

Quote:
Originally Posted by SuzannaR
Repositioning splint therapy for a year worked for me. Although the joint only went back to about 85% of functioning, I thought it was still better than going for surgery.
Was wondering what a repositioning splint is worn and how it works. Did you have to try various splints to find the one that worked? I have a displaced disc without pain put have popping and are on a soft food diet only. Is this what I need?

 
Old 10-18-2006, 07:38 AM   #10
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Clencher HB User
Re: To those who say "don't have surgery"

I had arthroplasty (Open Joint) surgery August 30. A little over a month later and I'm in pain. I clench my teeth at night. Even a splint doesn't stop the pain in only protects my teeth. My jaw catches sometimes when I am eating or talking, that is very painful!!! I had the surgery because my disc was displaced and causing bone spurs with the bones rubbing together.
I am on soft diet. I am also on a therapy of using 20 tongue depressors that the doctor taped together. I have to hold them in my mouth for a count of 10 with 6 repetitions at least 4 times a day. I have to add 1 depressor every 3rd day. I am up to 23 depressors with one more to go before my next appointment. I'm still only able to open at about 2 1/2 fingers width. He says the normal is 3 fingers.

I can't live with this catching and pain forever. His anyone every done hypnosis for clenching? I am considering it.

I go back to the doctor on the 24th.

 
Old 11-05-2006, 01:29 AM   #11
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julie goolie HB User
Lightbulb Re: To those who say "don't have surgery"

I had surgery at 19. It was the worst decsion at the time. We didn't know better. The oral surgeon was recommended by my orthodontist who did not offer conservative treatments or approaches. My jaw was clicking during brace work, then my jaw started slipping. The rubber bands used for correction were pulling on my jaw muscles. Yet he had me continue treatment until it got worse. By the time they decided the braces should come off my jaw began locking up.

My right joint became displaced and I could hardly open my mouth. They surgically manipulated the joint to put it back in place. I was in 5 times more pain after the surgery. Pain killers hardly took the edge off. Then my left side slipped out of place. The splint or bite guard caused more pain. My jaw continued to lock up. We sought another opinion. A specialist we saw through Loma Linda Dentistry said conservative methods should have been tried before rushing to surgery. He looked at my posture, neck and shoulders and recommended phsycial therapy or a chiropractor. I had injuries to my back and shoulders before along with mild scoliosis that may have contributed to the problems I was having.

Luckily I found a chiropractor who also had TMJ and was very knowledgable. Along with muscle relaxants I began to heal. After suffering for a year my worst symptoms cleared after a few months. Therapy included the relaxant, adjustments, massage, ultrasound heat therapy, accupressure and a muscle activator. The left disc that slipped out, glided back into place on it's own. The right side recovered as well. I also learned to sleep on my back with pillows to support my back in the most relaxed postion. Small pillows for my neck and lower back then a larger pillow under my knees. This is what I believe has been the best technique to maintaining a healthy posture and less tension in my neck, shoulder and jaw. It had been 12 years since I've had major symptoms. Only grinding and tension sometimes with stress. My dentist made a soft bite quard for me that forms around my top teeth, a little bit like a bleaching tray but a tad thicker. I only wear it at night when I feel tension and notice I've been grinding my teeth.

From my experience and research most oral surgeons are bascially doing exploratory surgery and there is not enough data or success rate to support most of thier methods. I felt like a guniea pig. I contribute my sucess to my mom who believes if you are unsatisfied with a doctor keep looking until you find someone who won't push pills or surgery. Also we learned to do our own research from then on for any health problems our family faces. We always try to seek out more natural and alternative means. Most Western doctors are trained to treat symptoms and do not work find the the root of the problem. What motivation do they have as there is no money in healthy people? You have to challenge them. Thank God the internet came along.

Recently the major symptoms have returned due to re-injuring my back and stress. I noticed I have been sleeping on my side again, curled up in reaction to stress. This creates shoulder and neck pain. So I have to be more aware and sleep on my back. I have started to see a chiropractor again in hopes it will correct it before it gets worse. I am already seeing results after two vistits. I no longer live near the chiropractor I like so if this doesn't work I will search out others, who have more expercience with TMJ. I started taking a muscle relaxant as well. Skelaxin.

I hope this post helps helps others. It saddens me to hear that so many continue to suffer after surgery. I was hoping to see more mention of alternative treatments when I looked here. Please remember that just because you or your doctor doesn't know what else to do doesn't mean there aren't other answers out there. I will try to get in more natural supplements that are known to help help joints like MSM, and glucosamine. Vitamin C and Omega 3's also help inflamation. I am praying that I get well soon trying these natural means.

Last edited by julie goolie; 11-05-2006 at 01:38 AM.

 
Old 11-05-2006, 09:53 AM   #12
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MaggieMay78 HB User
Re: To those who say "don't have surgery"

Hi Julie,

Thanks so much for sharing your story. I am sorry to hear about all you had to go through I really hope that you can get your new symptoms under control.

Just like you, I have tried alternative treatments...acupuncture, myotherapy/trigger-point massage (which works REALLY well for me), glucosamine/chondroitin, and other supplements. I am also going to get another conservative splint in December (the first one I tried was very poorly designed). Anyway, even though I haven't had a splint in a while, I am doing okay. I have a LOT of muscle pain...so I guess I'm not okay really....but function-wise, I have actually been improving. My mouth opens to about 45 millimeters, which I think is pretty normal for me, and I can eat most foods. I stay away from things like almonds, steak, and obviously chewing gum! But, my bite still feels "off" and uncomfortable, and my facial muscles hurt a lot...so that is why I'm going to try a VERY conservative splint. It is not a repositioning splint, which I have been told is unnecessary for me (several different dentists agree on that point). This is simply a flat-plane "stabilization" splint that hopefully will help relax my muscles.

I do have problems sleeping on my back...I try so hard, but always seem to end up on my side. Grrrr...just like you, I notice that sleeping on my back is helpful to me. I am going to keep trying that.

Thanks for all your tips, and good luck, I really really hope you start feeling better soon. Please keep us posted!

Meg

 
Old 12-02-2006, 11:44 PM   #13
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julie goolie HB User
Re: To those who say "don't have surgery"

Thanks. Im feeling better after seeing the chiropractor three times. Also I stopped taking the muscle relaxant and continue to wear the biteguard as I still grind at night. Tensioncomes and goes still but no pain and I can open my jaw and chew without any pain. I continue to try and sleep on my back with a memory foam pillow to support my neck, a small pillow under my lower spine and a large pillow under my knees. This helps releive tensin in my back and neck. I find that when I do sleep on my side the tensin returns.

Last edited by julie goolie; 12-02-2006 at 11:50 PM.

 
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