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My Five Year Battle With TMJ

(Editors note:  I’m very pleased to welcome a new contributor to the site today. Probably much to the relief of our other writers, Michelle Cardinal is the only Bizzy Life contributor I have sexually harassed or purchased lingerie for (it’s OK, we’re married). I do look forward to Michelle’s unique perspective on living bizzy,  based on an uber-successful career and life-long appreciation for travel, design, and finding the best things in life.  However, today she details how an innocent trip to the dentist led to five years of pain and massive medical bills.  TMJ is an affliction that is quite common, and widely misunderstood – even by medical professionals.) 

About five years ago following some dental work, I became afflicted with TMJ (Temporomandibular joint disorder)It all started with the replacement of a 25 year-old-filling.  My dentist convinced me I should switch to a more eye-pleasing white porcelain filling.  Unbeknownst to me, porcelain is less forgiving than metal if not properly shaped, and can result in misplaced bite.  That in turn, can throw off alignment of your jaw and surrounding muscle tissue causing TMJ.  Weeks after my dental appointment, I discovered I was clenching (Bruxism) and damaging my teeth.  But worst of all, my jaw, teeth and gums were in excruciating pain.

My dentist refered me to a “TMJ” specialist and warned me that there are many questionable forms of treatment.  “Whatever you do, don’t let them operate on you!”  Were his last words, as I scurried out of his office.  Online I found horrific stories of people who had their jaw joints and muscles operated on, only to become disfigured with no pain relief. And then there was the story of my sister’s childhood friend who in her 20’s had all her teeth removed and replaced with false teeth, only to remain in pain!  Proceed with caution, indeed.

I first meet with Dr. Summer, a very nice man, who appears to have just walked off the set of a 70’s TV show, complete with brown corduroy jacket with patches on the sleeves.  Dr. Summer is located in a sparse downtown Portland office.  No receptionist.  “Ok, that’s fine,” I think.  He seems to really know what he is doing, his walls are covered with charts and posters about TMJ and he also gives me several very informative pamphlets on the subject (he also mentioned he was involved in a published study).  He recommends making a mouth guard that I will wear at night when I sleep, but best if worn 24/7 (cost for guard is $750).

Simply said, the process of making a mouth guard is extremely unpleasant.  Imagine a big wade of blue clay stuffed in your mouth for 15 minutes, while you’re being instructed; “bite down as hard as you can!”  The clay then hardens in your mouth, and then your jaw needs to be pried apart with both hands, by the doctor, to remove it.  All this, while also suffering from a life-long gag reflex, is borderline torture!  All I could think, “Great, I’m going to suffocate to death with blue clay in my mouth, how undignified!”

After two weeks of using the mouth guard, the pain is hasn’t subsided. I go back and plead, “is there anything else you can do?”  Dr. Summer appears this day with a black eye and a bruise on his forehead.  “A car accident,” I wonder?  He then recommends making me some smaller mouth guards made of a rubber substance that I can wear during the day.  I try that, but the rubber is annoying, and I find myself clenching even more.  I return again, he recommends drilling some areas of my bottom teeth, to readjust my bite.  I’m desperate, I reluctantly agree.  It did offer some relief, but I’m still obsessed with the look of my bottom teeth, which look imperfect to me now (luckily nobody else seems to notice).

I need a second opinion.  I’m referred to Dr. Higdon by my hairdresser.  Higdon is also considered a TMJ expert.  This doctor has a receptionist, but he’s not very nice and demands I sign a “patients agreement” that among other things instructs I may not use my cell phone in the waiting room.  “Does texting apply?” I wonder.  Dr. Higdon is also a nice guy, who wants my advice marketing his services (he’s very impressed I run an ad agency).  He recommends making a new mouth guard (cost $900).  I learned marketing consultation is a very difficult conversation with blue clay in your mouth, good news; my gag reflex is improving.

This mouth guard is different and doesn’t fit as well as my old one.  It actually hurts when I wear it.  This design uses metal braces on the sides that cut into my gums.  I return for 3 more fittings.  This includes putting some strange smelling chemical in my mouth, along with a green paint-like-dye that marks the guard so he can adjust it using drills.  He pulls and pushes, stretching my jaw (which is a “no no” when you have TMJ), the fittings are painful and I discover green paint in-between my teeth days later.  I suspect that Dr. Higdon doesn’t want to recast the ill fitting guard, because it would require being resent to the lab and that costs him extra money (based on his old office furniture, it’s clear he is thrifty).

Dr. Higdon also recommends I wear the mouth guard 24/7 (only removing to eat).  “Really,” I reply?  “It seems awfully big, and I’m speaking with a lisp and drooling, this won’t be good for my business.”  “No,” he said, “your mouth will get used to it, give it a try.”  Later that day, mouth guard ensconced, I try to have a serious discussion with a co-worker.  It’s completely impossible, I look and sound ridiculous.  I ditch wearing the guard during the day.  I also eventually ditched the guard at night, because it doesn’t fit correctly, and I couldn’t bear the thought of more smelly chemicals and green dye in my mouth.  I go back to Dr. Summer’s original guard at night.

I then meet with two more dentists, first an orthodontist who recommends complete metal braces for 2 years.  “I don’t think so, I actually like my teeth alignment,” I think.  And let’s not forget the vanity issue (metal braces at 40 are not very attractive!).  The second dentist mentions I may need oral surgery (run!).

I also met with a Chinese acupuncturist, nice experience, but no lasting effect (Cost $150).

Then I met with a nice woman doctor, who I saw written up in Portland Monthly magazine.  Dr. Motlagh, also a TMJ specialist and cosmetic dentist.  Who recommended I start with physical therapy, before she would continue with my treatment.  She refers me to a woman therapist Dr. Reed.

I start attending 2X weekly physical therapy sessions, which included a painful in-mouth massage.  Whereby the therapist dones latex gloves and proceeds to painfully manipulate the muscles and tendons inside your mouth and jaw line.  Literally sticking her fingers into the fleshy tissue between my gums and my cheeks and lips, OUCH!!  The treatment is arduous but rewarding afterward.  For the first time, I started to see real progress.  As my treatment progresses Dr.  Reed teaches me to be aware of my clenching, how I place my head on my pillow at night (avoid leaning on one side of jaw too long) and how my spine and back can affect my jaw alignment.  She also showed me how to do self massage, as well as several neck and facial exercises (cost for 6 months $7,450).

I then return to Dr. Motlagh who proceeds with her treatment.  She explains she has a very high tech approach to the problem, which involves using a computer and electrical impulses to realigning your facial muscles to their original preferred state.  “Once we achieve that,” she said; “We will fashion a new mouth guard based on feedback from the computer.”  First, she attaches a bunch of wires (think EKG) to my face.  She then explains she is going to send electronic jolts into my jaw and cheeks to relax the muscles and electronically track the movements of my joints.  The treatment begins.  Several hundred jolts of electricity are shot into my face (think shock treatment)!  Each time, my face twitches uncontrollably.  The computer then tracks the movements using fancy color line graphs on the computer.

This all sounds very respectable to me; I’m a big believer in science, although this treatment is very expensive (cost $4000).  Only shortly after I leave the office, my left eye started twitching (think palsy), on its own.  Ok, I’m concerned.  “Perhaps it will go away,” I think.  I call Dr. Motlagh, who claims this has never happened before.  I’m very busy at work, and my husband assures me he can’t really notice the occasional twitching.  It continues.  I decide to power through it.   3 weeks later I go on vacation to Mexico, after a few margaritas the twitching disappears.  I then delay returning to get my new mouth guard, which I’ve already paid for, because I really like Dr. Motlagh and don’t want to have to tell her I’m skeptical about her treatment.  I eventually return, and she’s not happy I won’t undergo more electrical jolt treatments and warns me my mouth guard may not fit right because she now has to do “manual” adjustments.  Needless to say, the new mouth guard doesn’t fit.  I’m back to using Dr. Summer’s original mouth guard.

After all that, I’m now currently seeing they physical therapist Dr. Reed every few months for a painful “in-mouth” massage.  And I also inquire with traditional massage therapists, about their knowledge of TMJ.  Many know how to do a good jaw massage and are familiar with TMJ.  My TMJ has indeed improved, although not totally gone, livable.  It tends to flare up when I’m under stress, and when it does I still wear my original mouth guard (while sleeping), made by Dr. Summer.

I estimate the total experimental treatment for my TMJ cost over $15,000 (none covered by insurance).  It’s important to note that every specialist I saw was genuinely committed to treating TMJ, but I found, the proven magic bullet, is just not yet available.   In my case the TMJ symptoms eventually did diminish.  My guess is, if you’re suffering from TMJ, your jaw and facial muscles need to be retrained, from whatever trauma caused it.  This is most efficiently done with properly fitting mouth guard and physical therapy.  There are less costly over the counter mouth guards, but beware, anything that doesn’t fit properly could do more damage than good.  And as in my case, make sure your fillings are fitting properly before you leave the dental office, to avoid this whole mess in the first place!

(Important to note; there are many causes of TMJ, dental work being one, many theorize it is also stress induced.  Also symptoms vary from mouth pain, jaw clicking, limited jaw movement and migraines etc…)

Treatment Resources:

Dr. Kelly Reed (Portland, OR) – Cedar Hills Physical Therapy – (503) 292-3583

Dr. Summer (Portland, OR) – (503) 241-7353

Brenda Wilson (Eugene, OR Massage Therapist) – floradeva4u@yahoo.com

Joachim (Santa Ynez, CA Massage Therapist) – Terra Massage – (805) 688-9111

John (Santa Barbara, CA Massage Therapist) – Float Spa – (805) 845-7777

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38 Responses to My Five Year Battle With TMJ

  1. Jeff says:

    You’ve handled TMJ with such grace!

    (Some people whine over the smallest things. In fact, I know someone who wrote a book about whiners.)

    You remind me of my mom, who would listen patiently to others’ issues and never disclose her own.

  2. thanks, very nice blog post. very interesting and very helpful. thanks again for sharing.

  3. Anndee says:

    I am on my own TMJ journey…3 years now. I had a consultation with Higdon and Summers late 09. Since then I’ve done a splint (dentist), natural treatments (chiro, accu, massage), medications, and braces (1.5 years). I am going back to Higdon this week. I hope his treatment along with Physical Therapy are the combination I need. I’ll watch for the green paint.

  4. Crystal says:

    My jaw has been locked since I first vacationed to Portland in the end of May 2011 Sunday May 21st to be exact. It all started with the pressure in my ear from the plane. I have since moved to Portland from Kansas City, KS but am still having constant severe ear and jaw pain. It has been 14 1/2 weeks now! That’s more than 3 1/2 months in severe pain. Sometimes excruciating where I can only drink my meals! I can’t sleep anymore. I have done the same as Anndee plus general practitioner and ct scan, but minus braces…I am desperate for a solution. I have already thousands of $’s with no results and no insurance doesn’t cover TMJ. Someone Please Help!!! Any suggestions are appreciated!

  5. Candace Lucas says:

    I haven’t gone so far as to get braces but i have done the mouth guard and the tooth filing but what i’ve learned is that the mouth guard is really only useful if you grind and I don’t. REally what has worked best for me is the type of massage described by the writer. It is painful but it works. I live in NYC and go to http://bodymechanicsnyc.com becasue the therapist was trained in Canada where the program is intensely medical so she is really good. I’ve had 3 treatments. What was a constant pain is now just a mild ache, but only 2 weeks after the treatment.

  6. Martina Reece says:

    Hi Michelle,
    your Blog stopped in 2010.
    Did you get well?
    Please contact me either way…

  7. Beth says:

    So who do you think is the best TMJ? I got into a car accident in October 2013 and my jaw is getting worse, I would like to make the pain go away and the doctor that I was recommended was not billing insurance…

  8. Bizzy Life Author Avatar Michelle says:

    I would recommend Dr. Reed, very highly. She does Physical Therapy (and massage). Of all the things I tried, that worked best. For a mouth guard – see Dr. Summer (but not for long term treatment).

    With help of Dr. Reed, my symptoms have decreased greatly. It only flairs up when I’m under stress. Then I wear my mouth guard and self massage.

  9. Liz says:

    My experience is so similar to yours. I too had trauma from dental work an have seen a variety of people in desperation to try to solve my problem. Physical therapy, exercise and anti anxiety medication helped the most. It has been one year since the trauma and I’m not fully better. I still have pain in my neck and jaw but it is slowly getting better( very slow) I’m hoping this will eventually go away and perhaps be something I just have to deal with once in a while. The constant pain is frustrating but I’m hopeful that things are at least getting better even though it is certainly a very slow process. Your story makes me feel hopeful. How are you doing now? Your reaponse would be much appreciated.

  10. Kimmy Es says:

    This is a really great blog. I agree with the author that dental work can throw off your bite, which leads to TMJ issues. I’ve had years dealing with TMJ issues and what I noticed is that if the bite on a filling is off, it can trigger the TMJ issues and then after months (the muscles getting retrained) that it settles. I’ve had jaw surgery to fix my bite which did help. But unfortunately dentists afterwards messed up the bite with fillings and crowns… and then recently my chiropractor who usually does a painful massage that helps TMJ actually did something wrong that made the TMJ worse. Now I have tingling in my lips on the right side, as well as pain where he massaged. This was a month ago. ERGH. So I have to throw out a word of caution on the massages.. I am better than I was years ago but still wish the pain would go away entirely.

  11. Lauren says:

    Wondering what your symptoms were exactly with your tmj. I have a mystery illness which I’m pretty convinced is TMJ. I have seen 3 ENT’s which told me there was nothing wrong with my sinuses. So I went to see dr Arthur Parker who’s appliance didn’t work well for me, I then saw dr summer who didn’t take any X-rays at all, just stuck some wooden sticks in my mouth and made me a mouthpiece. I’m scheduled to see dr higdon next week and am also currently seeing a vestibular specialist. Just got an MRI 2 days ago. The first dr. I saw dr Parker said I clench not grind my teeth. My symptoms are extreme head pressure, dizziness, headaches, neck aches, pain in my ear, some jaw pain when I wake up but not a lot. The main thing is that I have head pressure and I’m dizzy constantly. I hope you figured out how to successfully treat your TMJ. I haven’t read the comments section yet to see what your outcome is. I hope my experience with dr higdon is a more positive one than you had. :)

  12. Misty says:

    Hey Lauren,

    I have the same symptoms as you. I have been searching for an answer as well. Been all over as well. I am thinking mine is TMJ too but don’t know where to go. Just want relief. I would rather deal with pain any day then deal with this dizziness.

  13. bailey says:

    I am going through this exact thing now. I’ve gone to 3 dentists, 3 chiros, 3 massage therapists, and a TMJ “specialist” named Dr. Sutter who wanted to do the shock therapy. Thanks for the warning on that. I’m lost. I have basically given up on this. At its worst, when I bite down my lower and upper front teeth hit straight on, at its best, they only grind against each other. It started with terrible pain, then a chiro pulled my lower jaw, and since then I haven’t been able to realign. So I’m stuck with a pretty severe underbite. This is miserable.

  14. Peggy Fournier says:

    Hit in the right jaw ..case any help needed thanks you want me for a board i have it here with it..a very severe case…

  15. Cheryl says:

    Is this the Dr. John Summer in Portland Oregon. He destroyed my jaw with his spendy appliance. It was a nightmare and now I have a malocclusion. TMJ disorder is awful.

    Good writing.

  16. Cheryl says:

    I want to add some information to this. That device you mentioned one of the specialist using, the second doc, is just like what John Summer used on me. It was torturous. I wore it religiously, and then, my bite was permanently screwed. I have a malocclusion of the jaw–my front teeth don’t touch together and back upper teeth have a slight under bite, which resulted from his “recapturing” of the disk with that torture device. All the pressure is on my back lower molars, so it’s caused fractures to the teeth. Surgery is bad, but this is too! I had an OHSU doctor tell me that Dr. Summer ruined my jaw and was unethical. I’ve been told by three dentists that he did the wrong thing. Oh and don’t go to Dr. Parker either. He’s just as bad, but acts nice. They really make the bucks.

    I paid John Summer out-of-pocket, fought Medicare and won, and that was awful stress to go through when my jaw joint was “out” at the time. He acted like the law was clear, and I made that law clear in a two year battle, which ended with an administrative law judge. After I finished wearing his torture nightguard, my teeth didn’t close properly, so he put on all these gold onlays and composites. I didn’t know what to do, and I should have run. My bite is horrible. He promised to do aftercare, which is a funny word, from a bad dentist like him. He calls himself an inventor, and he practices on the teeth of other people while making the bucks.

    In 2009 or so, I went in because my teeth were jammed together. I was getting floss stuck. John used a circular saw (tiny one) with no safety, no gloves, and no mask. He saw straight between my teeth and ruined them permanently. Look at his record at the State of Oregon. You’ll see he has a lot of complaints, and he has been in serious trouble.

    Thanks to his bad placement of the onlays, I had to go to another dentist, who replaced one crown for now. Really, every one needs replacing, because he didn’t put on the crown so it fit snugly. He just sanded and glued it on. So floss got stuck already. Then, with that sawing, and I could smell burning tooth matter, it caused big gaps between my teeth. Guys, don’t go to him. He’s bad as a dentist.

    Online, you can try to get a guard made that is quite strong. It’s called Sentinal. I have found the store guard works better than any of them. A hard piece of plastic killed my teeth an wore them down more. It shouldn’t hurt that bad to take an impression by the way. I did mine at home. Wow! John has gotten bad if that’s how he took your impression.

    The massage in the article above is the best thing for it. And believe it or not, hip issues can be connected to the jaw. Also, look into Lyme and parasitic infections. That is often the underlying cause. I barely trust anyone anymore, and I’ve spent over $6 thousand on these so-called experts. I’d trust the massage therapist the most.

    One last thing–John Summer altered his records, when he couldn’t show that he reimbursed me. So after all my fighting to win the case, he likely got paid twice. I was too ill to report him, and I mean I couldn’t walk or function. I might file a complaint, because he did to me what he’s done to at least one prior to me. You are lucky in one respect: You didn’t wear the appliance that the second doc recommended, and John came up with that device. Oh these people are awful: worse than TMJ.

  17. Antoinette says:

    I have not had any issues with my teeth or jaw or anything of the like until my normal dentist bless is heart passed away earlier this year and I was referred to a locum who just happened to be a maxio-facial surgeon and a TMJ disorder doctor. So off I go thinking a straight forward 6 monthly dental check up and thousands of rands later walk out of the office with a diagnosed TMJ disorder! What the hell… I have ZERO symptoms but he was convinced that my jaw clicked. So what do I know… i ain’t no dentist! so i sit now with a splint which is annoying the blerry daylights out of me. It catches my lip and basically makes me sounds like I have a speech impediment. He told me I would initially only have to wear the darn thing for 3 months 24/7 including eating with it! that is a challenge on its own and after the first meal decided yep, that sounds good in theory it ain’t going to happen in reality. In all honesty, I don’t see any changes and I reackon that when these 3 months are up I am taking the thing out. It annoys me when I go for a dental check up – I am not looking for a 101 other things wrong… just do the job of cleaning the teeth, filling in the gaps and move on… since when did dentistry become such a story!

  18. Kerry says:

    My 15 year old went in for a “routine” cavity filling at the dentist and is now dealing with what I can only describe as TMJD. It’s only been a week but from everything she is going through and everything I’ve been reading, this seems like it will be a long term issue. I am terrified for her and have not disclosed too much to her other than to eat soft foods and not open her mouth too wide to yawn etc. We took her to see her ortho who prescribed 3 days of ibuprofin 4x per day. We have since made an appointment to see a neuromuscular dentist who is supposed to deal in this sort of thing but I don’t plan to push things like braces and splints and all the other paraphernalia I keep reading about because it doesn’t seem much of it even works. Does anyone have any experience with air travel and if that causes issues?

  19. Sasha Rush says:

    Does anyone get a numb tongue with TMJ?? Mine goes numb off and on!

  20. Selina says:

    I know this blog is a few years old but I’m hoping this info helps. I’ve suffered with TMJ for 13 years. It’s painful, debilitating, and steals my joy at times. I had my jaw moved forward at age 13 by a Herbst Appliance due to my overbite. Terrible. 13 years of increasing pain. Last month I went to the only true TMJ specialist in the PNW, Dr. Jason Pehling in Seattle. CT scan showed it all, jaw trying to force forward when it doesn’t fit there, bone erosion and a spur on the right side. I need a splint (mouth guards are NOT the same) for 6 months, braces, surgery and braces. The splint will get my jaw to relax back into the socket and stabilize the muscles, braces will align my bite to keep it there, surgery will lengthen my jaw to get rid of the overbite, and braces still to solidify it all.

    Worth it! Go to him! He’s out of network but worth it.

  21. Selina says:

    Another thing. If you have lower back or hip pain get that treated too. Especially if you get neck pain like I do. The bottom of the spine effects the top and vice versa.

    Chiropractor, physical therapy, acupuncture, massage, and of course fitness!

  22. Trevor D Hitchin says:

    Thank you for sharing your trauma and very personal experience on the slippery ‘black ice’ side of dentistry. . . it’s always that oooooonnne little thing that knocks the first dominoe. then ….katy bar the door. So real quick…i am not sure if/how/when i can erase this…i do not mean to hijack your page..but do want you to know:

    1. you helped a guy in 16′ degree weather here in garden city, idaho..who has been in science non-fiction mind bending haw/skull/back of neck tmj lockjaw pain for nearly 25 years straight….my cranial sacral & amma therapy (7 yrs 1x/wk ea.) has helped…

    My condition:

    Also Doctor induced…. think Marathon Man. My

  23. Trevor D Hitchin says:

    …total out of pocket expenses due to my ‘experience’ are immeasurable…millions in hard costs / millions in soft costs…hard to ask a girl out when you can’t openyourfrigginmouth <— all one word. ;-).
    what i want to convey is that you have been at the finish line of my hell….in many ways I am only just now…here now…able to process the degree to which my life was compromised by run-in with the dark side of medicine… to know one suffers not alone nor in silence…to feel & see it 'getter lighter/better'…ah….you my dear have succeeded. Tbc…chirp goes the battery…'snooorrrree whhzzz' goes the Labrador on my feet. (it ain't all bad…)

  24. Barbara says:

    I also had TMJ and saw Dr Bryce Potter in Portland, Oregon. He did the surgery on both sides of my jaw and I have been pain free for about 20 years. I did have to wear braces before surgery to correct an alignment problem. The combination of the two was successful for me.

  25. 541-743-6131

    Specializing in orthopedic massage and myofascial release for TMJ symptoms and recovery.

    Thank you , Michelle, for mentioning me in your blog.

  26. sharon daddio says:

    I started gettin this pain over five years ago. I thought it was from my teeth but my dentist said it wasn’t. My doctor didn’t know what it was either up until a few months ago told me they thought it was TMJ. I have such awful pain everyday I don’t know what to do. The pain doesn’t ever go away its so bad. I don’t have money for any of these treatments so what do I do?

  27. Jake says:

    You only went to acupuncture once that was your problem. Plus that guy ripped you off it should only cost like 50 bucks. You should go at least like 8 times and take the herbs they give you. Also, see a chiropractor that works with tmj. I cannot believe you wasted so much money.

  28. tmj is ridiculous says:

    5 years ago I had regrettably the most intense month of dentistry done, 2 2nd molars pulled bc of RTC’s gone wrong and was told to get three more additional RTC’s , plus a huge filling that were all crowned. I should have said no because I didn’t know any better about RTCs and so got myself into over five years of intense problems from badly fitted crowns. BC these crowns are on both sides of my jaw my alignment was completely off, I ended having my lower jaw pushed to the right and back 3 mm. I had pain, teeth shifting, jaw locking, it even affects your posture , the back of my head would get numb very quickly, ringing in ears that would not stop. This is serious , I thought I was going insane my face lost muscle and tissue at the bottom, I lost muscle at my temple of one side bc #13 was touching absolutely nothing, my nose started to hook. Dental problems are no joke once you’re jaw is thrown out of alignment all hell breaks loose , I wish bite alignment was taken seriously and dentist were careful and serious about performing RTC’s but it seems like its more of a multi dollar industry strategy for which you are told to go for tmj expert.

  29. moogs says:

    Try Botox in your jaw. It completely saved me. It is not covered by insurance but google it and you can find a private dr that will do it. I suffered for years and had migraines from the pain, and nothing worked. I went to a chiropractor and that helped for a short time. The botox basically paralyzes the jaw muscle (not so much that you can’t chew) but it will stop you from clenching. In time, somehow your brain is retrained to think you can’t clench and it just stops. I did the procedure three times with four months gap. It’s been over one year since the last time and I am still doing fine. Good luck!!

  30. Not five, but fifty says:

    Here’s my fifty year story…I had braces when I was 14 years old, and within weeks of having my “finished result”, started noticing that my jaw was uncomfortable, like I had to force it back to be able to close my bite. By the time I was 30, I was in enough pain that I began to look for answers. The same orthodontist recommended braces again to “open my bite”. That sounded good, so I went for it. It didn’t help. Instead of forcing my jaw back to close my bite, now I am no longer able to even get my teeth to meet together in any kind of comfort, so I have to hold my jaw slightly open all the time. This causes the muscles to clench tightly to keep my mouth from just hanging open. And then I end up subconsciously trying to find a comfortable spot to get my teeth to meet so my jaw can relax. This has resulted in constant headaches, jaw aches, muscle pain on down my neck and into my lower and upper back. About five years ago, I too went to see Dr. John Summer. I love Michelle’s description of him, right on. He made a splint for me and I still wear it at night. I have to say, he must be able to help enough people to stay in business, so he must have some success. However, with me, he ground on a couple of high spots on my teeth about three different visits, to no avail. One day I had a nine o’clock appointment with him, and when I went to his office, he was a “no show”. This spoke volumes to me about his professional and personal character. I have not been back. He did suggest I see someone about physical therapy but never gave me any information on where or who to go see. I have been to numerous physical and massage therapists, with no lasting effect beyond a day or two. Recently, my pain has become worse, I have a clicking of soft tissue (not the actual joint) now, and my tinnitus which I have had for over thirty years is at an all time high. Once more I am going to seek help. I know for sure I won’t go for surgery, nor braces. I was delighted to read Moog’s suggestion to try Botox. That’s next. And more physical therapy. Everyone’s comments on this blog have been so encouraging. It’s nice to know one’s not alone, and although my pain has been nearly a lifetime, it is not as severe as many of you. We all pretty much “suffer in silence.” If I had not had braces when I was a kid, who knows……….

  31. Not five, but fifty says:

    Okay, I have more hope. I have an appointment with Dr. Ben Sutter in Eugene. He uses technology, called DTR, to measure bite dysfunction. Cost is $4,350.00 or so. I’ll keep you posted…..

  32. Danielle Wiegert says:

    I’m very curious about how your appt with Dr Sutter turns out! I had a painful tooth that my dentist said was hitting so he adjusted it… which made the tooth behind it hit, so he adjusted it too.. which put my jaw muscles into spasm and I’ve had ear pain, neck pain, headaches, jaw pain etc since. My bite changed every day, sometimes many times in the same day! It finally started to feel like my bite is getting back to normal and now that original tooth hurts again. It’s nothing but crowns and fillings back there so my bite has never been the same. I keep thinking if it could just be adjusted right then it would all stop!

  33. Karen says:

    Ive had TMJ since a child where My mouth always opened with a slant. I’m 59 now. I had surgery like 13 years ago because my mouth had a one finger opening. I was lucky since I had no accompanying pain, but did end up with a clicking (tinnitus). An oil ear drop usually eliminates it for quite awhile. Five months ago my jaw became dislocated and now painful to chew and my ear gets occasional shooting pain. I’ve always had neck and lower back pain which using Chiropractic and message therapy for 30+ years is helpful. After reading blog I never realized this relationship to TMJ. I tried scuba diving 7 years ago but my ears and nose couldn’t handle it. Snorkeling better but my ears still bother me. I’m quite discouraged about my choices now. I live aboard a boat year round and travel. My HMO is in a northern state that is not conducive for long term therapy. I clench during sleep, night guards did not help. I just worried that as my mouth opens less and less with pain my senior years are going to be miserable. I’m hoping new technology will catch up.

  34. Rachel Lynn says:

    I am 31 years old and also suffer from TMJ after having my wisdom teeth removed. Reading this article I kept thinking “did I write this?” Everything was so spot on. I have only done the nightguard and the physical therapy but I need to get braces because I am being told that until my bite is corrected the muscles will not rest. But of course I am skeptical of dental treatment. I think at the end of the day stress management is so important. I hope to get a cure soon, It is very depressing, and very expensive to treat.

  35. Christine says:

    Great blog. My jaw and ear problems have spiked in the last 6 months and I went to TMJ & Sleep Therapy Center in San Francisco. $600 visit where Dr. Alkhoury did tests and x-rays. He said I do not have arthritis in my jaw but that I’m on my way. He prescribed a day and night mouth guard (appliance) and Prolo therapy ($6,500). That is way too expensive for me so I have been searching for other solutions. But after reading this blog, I guess it’s about average. I’m more worried that the appliance will make my TMJ worse necessitating more and more treatment. I also contacted Dr. Dwight Jennings, another TMJ specialist. I have not seen him yet but the receptionist told me the cost can be anywhere from $4,200 to $8,000. Yikes. Next I’ll contact a physical therapist to see how much that treatment would be.
    To “Not five but fifty”… what were your results with Dr. Sutter in Eugene?

  36. Tara says:

    I’m lying here in bed right now with a mouth guard that only kind of fits and with my millionth headache this week.

    Thank you for the reminder that there is no magic bullet, but maybe some relief somewhere.

  37. Dorothy says:

    I googled TMJ issues bothering my crown and came across this blog, which I enjoyed reading, and I empathize with you, Michelle, and the rest of you. I can relate also to the “not five…fifty” poster because I’ve had nearly that amount of time with TMJ issues. It’s been 47 for me…a little longer if you could the jaw clicking I developed the last six months I wore braces when I was 16-17 years old, and then the jaw clicking that sporadically continued after I got my braces off. I wore my braces 3-1/2 years, for which, I remember noticing that whenever I got them tightened, I could barely chew even bread it was so painful and uncomfortable, and my teeth would slam together out of the blue from the tightness of the braces. It was horrible. Anyway, the last six months of wearing the braces was just for supposed jaw alignment. I had no clicking in my jaw until I got the braces toward the end and after I got them off.

    Fast forward to age 20 when I woke up in the morning and my teeth felt sore and loose. I told my dentist at the time, and he said I am clenching and proceeded to make me a mouth guard/night guard that went over the whole top of my teeth. This dentist was a perfectionist, so he was sure that he did everything correctly, and I was not bothered by the goop for making the mold. When it was done, he put it in a container and gave it to me and told me I’d have to wear one the rest of my life to protect my teeth because I already had two molars with cracks in them from my clenching that did not need any fixing at that point, but as he said, “let sleeping dogs lie,” and it can be fixed in the future if and when it becomes troublesome. Well, this dentist did a great job because I wore that mouthguard for ten years, pain free. It worked like a charm. But when it wore out, I had to get a replacement one at a dentist’s office in Spokane, WA. Well, that one really didn’t work all that well, and so I finally went to a TMJ specialist. This guy said my face was uneven because of my TMJ and he proceeded to make me a new bite guard that was HUGE where I could not close my mouth completely at night. It was all on the top but there was a little tongue-like notch that protruded from the roof of my mouth behind my two front teeth that was supposed to catch my lower jaw from sliding back while sleeping so that my jaw stayed in alignment. I only had to wear it at night, like the others I had worn, so the drooling and not being able to speak well didn’t matter. Well, it did its job of preventing pain and clenching and I liked it. Each few weeks and months when I’d come back for him to adjust it and shave it down a bit each time to eventually be a regular-sized bite guard, all was well. But as soon as it was down to the regular size, it was losing its effect, also because he had shaved down the little protruding thing behind my front teeth as well. Once that was shaved down to not much use, I started having problems…

    So, by this time, we were living in Colorado Springs (husband was military) and I went to see a specialist there. This guy was the one that eventually shaved down the notch to worthless and the bite guard because worthless because I then was clenching so hard, I got excruciating pain in my left ear. It was very painful. So, I was desperate and a friend of my told me she used an NTI, and that it’s helped her. She gave me her dentist’s name and I went to him and paid around $500 for this thing. I went hope that night and put it in and finally had no pain immediately! So, the NTI was working pretty well (but also I must add, I had anxiety and panic attacks in my early to mid 20s and then many medical issues with my youngest son while in WA State and continued into CO, but it became a more monitoring and maintenance checkups for my son there). But I started getting the ear pain on occasion, and that’s one pain other than tooth pain I can’t handle, so I was desperate again and went to see a very good acupuncturist who was originally from Taiwan. I went to him for treatment for about a year. The mess (cable cord it felt like) in the back of my neck disappeared the first treatment and stayed gone since then, which would be five years now. He helped pretty well with that. He also adjusted my neck. I’d never had chiropractic treatment before, so all of this was new. He had told me TMJ wasn’t my problem but the misalignment of my C-spine was causing it. So, fast forward to moving to MA and then now to PA, and I have been having horrible stress that has caused terrible jaw soreness and had a replacement crown put on about a month ago, and my crowned tooth feels sore and painful only if I touch it with my fingernail. A week ago, I went back to the dentist, and he drilled it a bit to even my bite. I’m still clenching, but maybe the pain on the right side isn’t as bad as it was. I also have taken Flexeril on and off since I got a prescription for it in CO. I went to a supposed TMJ specialist back in April, and he made me this soft, worthless bite guard that went over the top four front teeth and another piece that went over the four bottom front teeth. It was worthless. I’d never had anything so spongy and soft, and my teeth ached the next morning, so desperate again, I drove over an hour to a dentist that made real NTIs and got my old one replaced with a new one. It seemed to be doing the trick, but with all the stresses of my husband being unemployed for the past 9 months, has caused more problems with my jaw. My clenching always ties into how stressed out I am. Anyway, the dentist gave me the business card of a TMJ doctor he said is really good. I hope to go visit her some time in the near future. I also visit a chiropractor and massage therapist here and have been using massage therapy since I was in my early 20s, but that’s more for stress relief and untwisting my rolled up, tense muscles in my neck and back. I’ve had that problem also since my early 20s. I am going back to the massage therapist tomorrow. I haven’t been able to go for a couple of months. So, I’m looking forward to that. Thanks for this great blog and for seeing that I’m certainly not alone, that so many are suffering just like me. I’m glad to see some people have gotten relief and/or been actually cured. It’s good to see that.

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