I've been dealing with TMJ since '97, but within the last 1-1/2 years, it has gotten so much worse. I know of two people, one a dentist, who has had successful surgery. The dentist went to an oral surgeon that I tried, who made me a new splint, I had been wearing a nite guard (1st oral surgeon I saw made this device for me) for 4 years to stop clinching at nite. When I attempted to wear the new splint, I was so miserable, it made me so much more worse,I just couldn't put it back in my mouth- I also had been on two meds at night - Elavil and a muscle relaxant - I attempted to stop the muscle relaxant, which a Pain Management doctor had prescribed)I told the Oral Surgeon that two things had changed (I tried wearing the new splint and stopped the muscle relaxant)and something had made me worse, he wouldn't hear of the splint making me worse, said he never would have put me on those meds, didn't know what they were, but never would have prescribed them,and then sent me packing saying that he couldn't do anything more for me. I then went to a new dentist, who studied TMJ alot in college, he advised me that the new splint was not working, and to try another med (Robaxin - for daytime use-won't make me sleepy) and try wearing my night guard during the day, again I started clenching so much more that I got worse. He told me to then only use the nite guard again at nite, and that it sounded like wearing a day time splint wasn't for me. Again, surgery was mentioned. I feel like I'm beyond just clicking and popping, I feel/hear bone on bone and have terrible head spasms to go along with the pain in my jaw/face. Lately, I have begun thinking that surgery seems to be the only relief in sight, but so many TMJ sufferers say 'no way'. I feel so helpless right now, so miserable, so scared that this will only get worse, with no relief in sight, for the rest of my life. Any comfort or hope you can give me would be so appreciated.

I would also like to know the answer to this. There must be successes out there. I can't believe that all TMD surgeries have ended in disaster. Are there certain types of TMJ in which surgery is more successful? What is the definition of succsessful in the view of the surgeon? Funtionality or freedom from pain, or both?

Are there any Drs. out there that can give us some answers?

This is an example of a consent form. Be assured, if something goes wrong the doctor is not responsible.


The proposed surgery has been outlined for me in laymen's terms and possible complications and side effects have been discussed including ( but not limited to ):


___A.Objectionable scarring of the incision line, possibly requiring later revision.


___B.Postoperative swelling, discomfort, bruising of the area, bleeding, hematoma (blood clot) formation, and wound infection.


___C.Adverse or allergic reactions to medications oranesthesia causing multiple side effects, some of which may be serious.


___D.Foreign body reaction and (if used) rejection of implant materials.


___E.Malocclusion (change in bite) after surgery.


___F.Postoperative development of adhesions (scarring) within the joint space which may cause continued jaw dysfunction and decreased range of jaw movement or chewing difficulty.


___G.Facial muscle weakness, particularly of the forehead and eyelid, or inability to close the affected eye tightly, which is caused by injury to
motor nerves in the immediate surgical area. This weakness may be partial or total and is usually temporary, but may be permanent.


___H.Sensory nerve damage, numbness, or other sensory alterations which may be temporary or permanent.


___I.Ear problems, including infection of external, middle or inner ear, ringing in the ear, hearing loss or equilibrium problems.


___J.Freys Syndrome


___5.I understand that additional treatment may be necessary post operatively, including physical therapy, splint therapy, reconstructive dentistry,
orthodontics, jaw repositioning surgery, removal of certain fixation devices, or further TMJ surgery including total joint replacement, bone grafts, and
arthroscopy.


___6.I understand that this is complex surgery, and there can be no guarantee of complete resolution of my present symptoms or jaw dysfunction. Occasionally
there may be increased symptoms post operatively.


___7.I have been told of my option of a second opinion regarding this procedure from a qualified professional.
___8.Recognizing that during surgery some unforeseen condition may be discovered that might necessitate a change in approach or different procedure from those
explained above, I authorize Dr. ****o perform such
procedures as are necessary and advisable in the exercise of his professional
judgment.


___9.I understand that general anesthesia will be used for my surgery and that there is risk of serious bodily injury inherent in such anesthesia, including
death. I have been told not to have any food or drink for 8 hours prior to my anesthetic and that CONSUMING FOOD OR DRINK BEFORE INTRAVENOUS GENERAL ANESTHESIA MAY CAUSE SERIOUS COMPLICATIONS OR DEATH!


___10.I have discussed my past medical history with my doctor and have disclosed all diseases and medications, including alcohol and drug use (past or
present).


___11.I agree to cooperate with the recommendations of Dr. ****,
realizing that lack of cooperation may result in a less than optimal result. I have not been given any warranty or guarantee as to the result of the
proposed procedure.


___12.I certify that I have had an opportunity to read and fully understand the terms within the and that all the above blanks were filled in prior to my
signing this form. All my questions have been answered to my satisfaction and I am willing to undergo the proposed surgery.

TMJ has acquired the name of "The Great Impostor," and has been described in the press as "A Medical Mess."
Although all surgeries have risks, TMJ surgeries are especially risky have proven mostly unwarranted or unsatisfactory. An initial surgery can often lead to more. Except in life-threatening emergency situations, it is strongly recommended that TMJ surgeries be avoided or conducted only after multiple independent opinions. Additionally, certain jaw joint implants have been reported by the Food & Drug Administration to cause serious long-term medical problems, and rules have been tightened on their usage/approval.

There is currently no universally recognized medical discipline or accredited medical specialty that addresses TMJ. Jaw joints, due to their location in the oral cavity, are the only joints in the body that are considered both medical and dental joints. They are commonly and mistakenly isolated from whole body health and "assigned" to the realm of dentistry. Temporomandibular joints must be perceived as part of the whole body system and treated as are all other joints in the body. It is urgent that the medical profession take an active role in the diagnosis and treatment of TMJ. A change in perception would have several important consequences:

Current treatments often focus narrowly on the jaw and neglect other physiological systems in need of care. The desired therapeutic outcome is often not achieved, and many patients are left in serious pain or with serious dysfunction.

Hi BJO
You asked about successful treatments or surgeries for
TMJ.
I am a success story now for 12 1/2 years, I have the Christensen Fossa-Eminence Prosthesis implanted bilateral. I'm eating everything in sight without any pain, I'm able to chew any type of food and even hard candy at times.
There are no loose screws in my implants, as I have a CT Scan done every spring to keep an eye on my own condyles. As I have rheumatoid arthritis and need to make sure that my condyles are not deteriorating.

I can only speak of my success with these implants, and not for others!! Remember what works for some, may not work for others. Its like taking medications, we all can not take the same meds as we might have a different reaction to them. And of course the most important issue is, each patient's case history is so different, and the surgeon is also a big factor on his success rate with these implants!!

Best Wishes & Regards to All for pain free days!!!
Charlene

Paulette had a tumor removed from the base of her skull yesterday. She also has the Christensen fossa, numbness on the whole right side.
Charlene is absolutely right, what works for one does not always work for another. AND since she seems to be the only success story, while numerous others have had the same implants that have failed, I would say the odds are not good. We always hear the line, other people have gotten on with their lives and don't hang out on these forums. On other forums, you hear both the positive and negative sides of surgeries, why is it with TMJD, you RARELY hear postive? The writing is on the wall. People who have surgery feel relief right away, but once the nerves and muscles begin to grow back, you are thrown back into the pit of hell.
I have so much literature on these surgeries, if the FDA is shirking resposibility on these implants, there has to be a reason??? There is a jaw joint approved by the FDA recommended by patients whose joints have been damaged by previous implants or cancer, but the average patient is advised to think positively and proceed with caution. If you have function, don't even think about this surgery, it will not "necessarily" cure pain.
Elaine

Hi BJO,

I've posted this before, but just for your info, I believe the Christensen Implants are BANNED here in Canada - what does that tell you?
(By the way, I'm a success story - with splint treatment and orthodontics.)

Marlene

Hello! This is my first post on this board, but after scrolling through the topics here I just had to post. I'm 24 and started splint therapy in high school. I tried several different splints over a few years. When I was 21 I saw a doctor that I can now only call a quack! I've talked to several other people and all of them got worse during their treatment with him, as did I. While seeing him he had me go through 2 unsuccessful surgeries. After him, I had a vertical osteotomy done where they break the jaw. My jaw didn't set right and they had to go back in 3 times to try to fix it and finally decided they couldn't and I was left lop-sided. About a year ago I was referred to an oral surgeon outside of Tampa, Florida (I'm from Oklahoma) and he has been my miracle worker. He's one of only a few dr's in the country who do a fat graft the way he does. HE removed my discs and replaced it with tiny balls of fat from my stomach. It has been AMAZING for me. I still have some muscle pain but that's because my bite is still somewhat off and he's putting me in braces. He feels confident that after braces the muscle pain will go away. I will never say this about another dr's office, but I love going to his office! Everytime I'm there I get to talk to other patients who are from all over the US and from other countries. Everybody I've me there says the feel so much better. I have a friend who has the same history as me about previous history (we even saw the same docs - that's how we met) and she is having this same surgery in December.

Don't get me wrong, after the surgery you have a year of limited chewing and there is a big commitment for the therapy and all, but I thought it was worth it.

Sorry for going on so long, but I just wanted to share my success story in-progress. Now I'm able to go back to school and move on with my life. BEfore this surgery all I could do was lay in bed and cry.

Good luck to all!

:)
Lana

Someone named LanaLane mentioned at successful TMJ Oral Surgeon just outside Tampa. Lana, could you point me in the right direction....maybe his name or a website to go to? I had an unsuccessful surgery last July. My discs were out of place and they slipped them back into place through Arthroscopy. I've tried everything to help speed along the recovery, but it just doesn't seem to be getting better. That sucks that you had to have multiple surgeries. Maybe you can help me avoid that if this Florida guy is so great. Any details or information would be helpful. I know you said it was still a long recovery....but, did you at least notice it was starting to get better within 6 months? It's been 8 months for me and i'm not seeing a light at the end of the tunnel. I do have a huge problem with handling stress and a very high-stressed job...which i'm sure doesn't help. My jaw is still popping, now on both sides....so if the surgery worked, i would think that this wouldn't be happening.

Thanks!

Katie

Also, Lana....was wondering what your recovering entailed? Did you use the Therabite? If so, how often did you have to do it and for how many months. Anything else that helped, like Physical Therapy, yoga, accupuncture, chiropractor, massage? I guess i'm just trying to figure out if i've done what i should for my recovery or if i've slacked and that's why i'm not recovering well. You're doing so well...so, you must've done it all right.

I'm sorry you're having so many problems with your jaw! I know exactly what you are going through. I will tell you my experience and you can see what worked for me!

About 6 years ago I first mentioned to my dentist that I was having a hard time with my jaw. I was grinding my teeth at night - this was my body's way of trying to get my teeth to line up properly. In the morning I could not open my mouth more than an inch or so. Over the course of the day it would open more and more, and my jaw would click and pop and it hurt very much.

My dentist sent me to the orthodontist to get a splint made. I wore a splint for 24 hours a day, even when eating (I took it out for brushing and flossing, obviously). My lower jaw was underdeveloped and I had a 110% overbite (That means, when my mouth was closed, my front two teeth came down well below my gum line in the front.) The joint of the left side of my mouth was degenerating. I had a scan of my head done, and I could see the jaw joint - it wasn't a ball, like it's supposed to be, but it was kind of like when you crack an egg and one part is round but the other part is all jagged. This was why I was in so much pain!

The splint helped SO MUCH. I wore it for almost 2 years I think, actually maybe closer to three years because they wanted to stabilize my jaw before they started braces treatment. I consider myself very lucky. My orthodontist is in the top 1% in all of North America and he is very thorough.

After my splint treatment was done I got braces. This helped my teeth line up properly. I've had braces for almost 3 years now. It's been almost 6 years since I have been able to eat without any kind of appliance in my mouth! They told me from the beginning that I would need Lower Jaw Surgery, and that braces wouldn't be enough to line up my teeth.

So, after almost three years of wearing a splint and after almost three years of braces - I finally got my Lower Jaw surgery last week Thursday. I am so happy. The recovery process is hard - you have to keep up your calories or your body will just hurt all over. I've been drinking a lot of Boost Plus Calories!

Joyce2 - How are your teeth? Are they lined up pretty well? Would you be against getting braces? I'm not sure you stated your age. I started this process when I was around 16, going on 17 years old and I am now 23. It's a very long process, but if you can do it, I recommend it. Do you live in the United States or Canada? I live in Canada, and I'm not sure how it works in the states, but I think getting health care in Canada is a lot easier. I'm sorry you've had a bad run with all of this, but there is hope!

If you have any questions, feel free to ask! If you want, I can post the x-rays of how my jaw was before and after surgery.

Everyone I know who has had any surgery like that, was made worse. They've all regretted it. Fortunately for myself, I never reached that point, because my splint therapy worked. I hope you too can avoid any surgery!

That's odd. Everyone I know who's had jaw surgery has absolutely loved it and are so glad they went through with it. Though I think we're talking about a different surgery all together. The surgery I had completed had to do with the lower part of my jaw, not the actual mandibular joint. I wasn't aware they did surgery on the joint itself!

I know of three who have had bilateral TMJ Concepts that are doing GREAT...very little or no pain with full function. And very little or no pain for them means taking an OTC pain relief no more prescription pain meds.
Shirlett

I am one year post-op bilateral TMJ fat graft surgery by Dr. Mark Piper in St. Pete, FL. He developed the technique. I am eating foods that I haven't eaten in 20 years, and have had tremendous success. The recovery was very time consuming, frustrating, and required a lot of discipline; however, it was worth it all and more!!! I have my life back now. It's worth checking out....even better - make an appointment and get his opinion for any TMJ disorder.

My teenage daughter has also had bilateral fat graphs, along mitek anchors, with surgery in October 2008 and April 2009 for her left and right joints respectively. Eatingagain, you describes her recovery as being time consuming, frustrating and requiring great discipline. Could you be more specific? Given your wonderful outcome, I am eager for my daughter to do as well.

Yes, we stayed in a condo in St. Pete for two weeks at the time of surgery - one week before surgery during which I received my braces and did pre-op procedures, then one week post-op until the sutures were removed. During the post-op week I went to physical therapy and followed up with Dr. Piper's office a couple of times for them to be sure everything was going well. I was in surgical braces for nine months. For the first 24 hours following surgery, the braces were wired closed. For the next three weeks, I was in rubber bands 24/7 with five 15 minute breaks allowed. During that 15 minutes, I had to eat non-chew foods only, use my Water-pik, brush my teeth, do the exercise regimen, take my medications, and get the rubber bands back on. During weeks 4-6 post-op, the time out of the splint was extended to 30 minutes five times a day. Every three weeks, the time out the splint was increased by 15 minutes, but remained at five times daily. After three months, I began to wear the splint only 2 hours three times a day plus at night for one month and tapered the splint wear from there. At five months post-op, I began 3 soft-chew meals (meatball consistency or softer) three times a week. At nine months post-op, my surgical braces were removed, and I was given the okay for eating pretty much whatever I wanted. The exceptions were gum, taffy, etc. I am also not allowed to bite anything harder than a banana or soft sandwich with my front teeth. At my one year post-op check-up, my opening was 37 mm with side to side movement of my lower jaw at 6 mm right and left. Dr. Piper has this procedure and protocol down to the jot and tittle. I have had a follow-up CT scan of the TMJ's every three months post-op to monitor my progress and be sure everything is okay. Now that I've done so well for one year, my next CT scan will be at six months. My dentist is amazed! His mouth dropped open when he saw me pain free and chewing for the first time:)

Thank you eatingagain for your comprehensive description. My daughter's procedure was far simpler -- just the surgery plus therabyte at home. One month, she is still in significant pain and recently had another locking episode. Would you mind also sharing what caused your TMJ dysfunction. My daughter has a very specific oneset -- all symptoms arose following the removal of her wisdom teeth. We believe that the oral surgeon hyperextended her jaw while she was sedated. Besides both discs being displaced, she now has significant bone loss of the left condyle, to the point that it is flat rather than round.

Thank you eatingagain for your comprehensive description. My daughter's procedure was far simpler -- just the surgery plus therabyte at home. One month, she is still in significant pain and recently had another locking episode. Would you mind also sharing what caused your TMJ dysfunction. My daughter has a very specific oneset -- all symptoms arose following the removal of her wisdom teeth. We believe that the oral surgeon hyperextended her jaw while she was sedated. Besides both discs being displaced, she now has significant bone loss of the left condyle, to the point that it is flat rather than round.

My left TMJ was originally injured in an auto accident in 1989. I had surgery performed in December of 1989 by an oral surgeon, then had surgery again in 1994 because so much scar tissue had accumulated. I've had occasional flare-up since those surgeries, but was always to calm it down with changing my diet, anti-inflammatories and muscle relaxers. In October, 2007, I was rear-ended, which displaced the discs in both jaws. I also have severe bone loss of one of my condyles. I have heard of bone regeneration following this surgery, however. The exercise regimen that I talk about is using the Thera-Bite as well as doing side to side "jiggles." I missed Mother's Day with my children last year due to having surgery, but this year, I've spent the entire weekend with them and have eaten everything from wings to ribs!!! I give God all the glory for getting me to a great doctor and for my healing. If you google Dr. Piper's name, it will take you to his website, and you can see that he is a world-renown teacher in the field of TMJ. He is a an MD as well as a DMD. I highly recommend him for your daughter. It sounds like her recovery happened way too fast, and the fat grafts did not have time to settle in. My nine months wasn't fun, but it was well-worth it!