TMJD has ruled my life for 6.5 years and I want my life back!
Sorry for the long post...but here is my story.
I am 33yrs old, mom of 4, and have had TMJD for over 6 years now. I lived in Hawaii until July 2009, and moved to WA - all of the docs I've seen were in HI. My TMJD happened after I bit into a hard candy and it felt like something popped on the right side of my upper jaw. Since then, I am suffering from an off balance feeling (it's not vertigo where everything is spinning, it's more of a feeling where I can't focus), sensitivity to bright light, my neck feels like it can't support my head, my muscles on the right side of my upper back are tight, I get occasional numbness / tingling in fingers esp. when on the computer, and when moving my arm up and down or in a circular motion it makes "cracking" noises, and I can open my jaw where I fit 3 fingers sideways, but what it feels like is the bone on the right side of the jaw pushes forwards upon opening, and I can feel a "ball" on the front part of my right ear. Sometimes it feels as if there is pressure behind my right eye or stuffiness on the right side of my nose. Thankfully, I don't get chronic headaches, it's more of occasional sharp shocks that go up behind my jaw area.
I have been to 3 different ENT's, 1 neurologist, an opthamologist, an optometrist, an orthodontist, a TMJ doctor, a regular chiropractor, 2 different physical therapists for my neck / shoulder, and a dentist. I have had 2 MRI's, 2 CT's, 1 MRA, spent 2.5 years with braces, have tried splint therapy, taken Zoloft, and currently am on one a days and magnesium.
The first ENT sent me in for an MRI and MRA, thinking it was something neurological - they did find scarring and thought it was MS (which scared the crap out of me and I couldn't sleep nor work and my TMJ symptoms became worse) so they sent me to a neurologist (which took 2 months to just get an appt) and she said it was old scarring, that I was all spazzed out on my neck and shoulder muscles, she put me on Zoloft and sent me in for PT. I went back to see her for a few years - I got off Zoloft because it never helped and nor did PT. She then sent me in for PT & massage and another MRI of my neck area. They found an impingement on my C4-C5 area, but that's all. I've tried other ENT's thinking it was a sinus issue, and the last one felt my jaw and told me that that could be causing problems. The massage helped, and one of the PT instructors felt the TMJ area in my ears, and told me that my jaw feels like it needs to be reset but after the braces were off. I also saw a TMJ doctor, and he placed an Aqualizer in my mouth, which took most of my symptoms away immediately - but was short-lived because Aqualizers are temporary splints. He couldn't help me either until the braces were off. The problem was that I was leaving for WA and I didn't have the amount of time to continue with his treatment.
Ok, so now I am in WA. I am due to see an NUCCA chiropractor tomorrow, to try and alleviate this dang off-balance weird dizzy feeling that I get. It is hard for me to work (I am currently unemployed and would like to get this fixed before I go back to work), and have tried emailing 2 TMJ doctors, none of which emailed me back and it's been a few weeks. BTW, I researched these guys on the AACFP website.
TMJ is ruining my life - I can't do anything because of it. Although, when I drink alcohol, it helps this feeling and I don't want to turn into an alcoholic!!
Thanks for listening to my story! It just sucks and I want my life back!
Re: TMJD has ruled my life for 6.5 years and I want my life back!
Hi! I live in Kent, WA where it's only few minutes away from Renton!
well I am so sorry to hear what you've been through. but I think you've found a great website where everyone understands eachother and that they are willing to help.
Although I guess I am on the mild side of all these fun-TMJ-related symptoms,
I too have the shoulder-arm problem. like if I raise my right arm up and down, there's this POP noise..
I just know that finding the right doctor is the key on this issue and RESETING the jaw shouldn't be taken into consideration unless there's no other way to fix it. But I'm sure, if you find a good doctor then you're good to go.
oh, and may I ask who you've seen as TMJ doctor around this area?
Dr. Pehling? Dr. Simmons? Dr..... Truelove, etc?
I just don't get the right feeling in this area.. so I'll be traveling outside of WA.
Re: TMJD has ruled my life for 6.5 years and I want my life back!
Hi 8413670! Thanks for replying! I am so thankful for this website and it has definitely provided a lot of useful information. I might even try neuromuscular massage - hopefully it's covered by insurance.
I haven't met with anyone here yet. It's been going on for years and I find it easier to email than just talk about it at a consultation - at least I can collect my thoughts and write it out without having to explain it over and over and over again! I have emailed two different TMJ docs - Dr. Pehling twice (once from his website and the other off of the aafcp.org website) and Dr. Farrand Robson in Tacoma (Oral Systemic Balance), but they apparently don't have the time to respond.
I am supposed to go in for an initial consultation with a NUCCA chiro tomorrow - hey, he's in Kent too! But, we'll see how that goes. I hope it helps with the stiffness and the off balance dizzy feeling. A bit extra magnesium helped quite a bit, not sure if you've tried it, but I was taking about 500mg / day - 250 in the morning and 250 at night.
Anyhow, if you find a good TMJ doc, please let me know. It just seems like a lot of them have a "pitch" that they want to sell you. I don't want a "pitch", I want a fix. Ugh. And, I am just sick that insurance doesn't cover it - except if you are a state worker here who gets Aetna Ins.
Re: TMJD has ruled my life for 6.5 years and I want my life back!
Hi there---I'm a mom of 2 as well, and I've had tmj for almost 20 yrs...so I know what you are going through unfortunately.. I'm going to throw a couple names at you that you might want to research and look at their websites.....Dr. Martin Fraschetti, Michigan. Dr. Clayton Chan, Nevada. Dr. Rosemary Rojas, Ca.---these are some good docs that I've come across. I'm actually going to consult with Dr. Fraschetti very soon as well. He has the Head and Neck Pain Center of Mi. and is a Functional Jaw Orthodontist, as well as a tmj specialist..for over 20yrs. Good luck to you, and if you have any questions for me, just email me. Take care, and best wishes to you! J.
Re: TMJD has ruled my life for 6.5 years and I want my life back!
Quote:
Originally Posted by jmitchell
Hi there---I'm a mom of 2 as well, and I've had tmj for almost 20 yrs...so I know what you are going through unfortunately.. I'm going to throw a couple names at you that you might want to research and look at their websites.....Dr. Martin Fraschetti, Michigan. Dr. Clayton Chan, Nevada. Dr. Rosemary Rojas, Ca.---these are some good docs that I've come across. I'm actually going to consult with Dr. Fraschetti very soon as well. He has the Head and Neck Pain Center of Mi. and is a Functional Jaw Orthodontist, as well as a tmj specialist..for over 20yrs. Good luck to you, and if you have any questions for me, just email me. Take care, and best wishes to you! J.
Hi J. Mitchell! Thank you so very much for the info! I've researched their websites and I am going to look into Dr. Rosemary Rojas "Dr. Rosie", because she is a neuromuscular dentist (I was advised to see someone specializing in neuromuscular dentistry), and she is in So. Cal., and I have friends and family down there - but not in the Beverly Hills area, but close enough!
Last night I put on a splint, and just wore my top retainer (just had braces off 6mo ago) - and I woke up and my left side was in horrible pain. Normally, it's my right side, but this time it was my left. The back teeth on the left side hurt like crazy. I wanted to see if maybe, just maybe, I would wake up feeling any different, but the splint made it worse - how's that! I feel much better now after taking it out.
I wish you the best of luck with Dr. Fraschetti. Please let me know how that goes!
Re: TMJD has ruled my life for 6.5 years and I want my life back!
So I went to the NUCCA chiro today. I had to pay out of pocket since my insurance doesn't cover. I did not have an adjustment. I was there for 2 hours taking x-rays and measurements, and my entire spine is completely a mess. I am 1/2" taller on one side, my pelvis is contorted to the right, and I couldn't go through with one of the x-rays to look at the base of my skull because I couldn't look up -if I did a dizzy feeling would come about. I have to go and see him again for the results of his analysis on Thursday, and an adjustment on Monday. I can't wait. He mentioned that appt. might be a couple of hours too.
J. Mitchell - thank you for the referral to Dr. Rojas in CA. I emailed her and you know what - she called me back and we talked for a good while!! Funny, I emailed 3 TMJ docs here in Seattle, and none of which called me back. Anyways, she sounds very informative, and personable, and not $$ hungry. I am hoping I can make an appointment with her soon. It's the whole money factor that is scaring me, because insurance doesn't cover. But, she did advise me that she was able to help a patient of hers get partially reimbursed from her insurance company, and even help a patient get disability.
I feel like I am on the right track. I hope I get a bit of relief from the Nucca chiro. We shall see.
Re: TMJD has ruled my life for 6.5 years and I want my life back!
Whoopie! Good luck to you. I know that Dr. Rojas is a very intelligent, very compassionate doctor. I'm glad that she got back so quickly. Also, you should print out the neuromuscular questions that I posted back in June of 09' to "Silverwings" under what questions to ask a doc.. I believe. I will move it to the top of the discussions list right now for you. Bring this to your appt., and make sure that Dr. Rojas does her testing like that . Especially taking tomograms, before and after getting fitted for an appliance, (if you need one that is...) Also, I'm sure she does the EMG (muscle testing to see how the muscles are working, and to get the proper measurements for the appliance as well). Good luck--you can always email me about treatment questions., I'm in my new splint right now--4 weeks out.
Re: TMJD has ruled my life for 6.5 years and I want my life back!
Thank you so much J. Mitchell!!
Dr. Rojas is extremely personable; she has gone through TMJ herself and even dentists go see her - how's that! She mentioned the EMG, and how she gets the exact measurements of how the jaw should be aligned, and designs the orthosis around that. I just emailed her, since it's mid-morning here and she is probably with patients right now.
How are you doing with your new splint? I hope a lot of your symptoms have subsided.
Re: TMJD has ruled my life for 6.5 years and I want my life back!
Hello hapachik,
Dr. Pehling's first consultation costs $295, which is the most expensive consultation fee I've ever seen. then he will take CT scan which I remember as somewhere around $600s. I've researched him online and found some unpleasant notes about him and his office. I figured treatment wasn't going to be just once meaning I don't want to be uncomfortable every time when I have to go in. ANYWAY, I sometimes take magnesium too, because I've read it's good for joints and muscles. adding the fact that Jmitchell and others recommended to do so. (They are very knowledgeable and are the nicest people who I am very thankful for.). Although it is unlikely to find a good TMJ doctor around this area, if I ever find one, I will give it to ya. But the chances are..
Oh, I already went to UW Dental clinic, and let me tell you, DONT GO. period.
Last edited by hb-mod; 02-05-2010 at 02:20 AM.
Reason: Removed Quote. Please use "Quick" Reply rather than "Quote" Reply. Thanks!
Re: TMJD has ruled my life for 6.5 years and I want my life back!
Hi 8416370! Thank you for the info on Dr. Pehling and UW. I looked up his website and emailed him via his website email address, and via the American Academy of Craniofacial Pain. Did he call me or email me....nope, probably because my first question was about how much everything would cost and if they have payment plans, etc. I also thought about UW, and I read one of your posts about the guy who is suffering and has been all over the country - including UW, so UW is off my list. Oh, and there's another in Tacoma that I also emailed - Dr. Farrand Robson with Oral Systemic Balance - and they didn't contact me either - must be related to Dr. Pehling or something.
I have spoken with Dr. Rosemarie Rojas in CA, and she is President of the ICCMO. She called me back right away - I spoke with her (yes her, not her office staff - but the doc) on Tue and Wed., and found out that she has payment plans, and doesn't charge interest . There are 2 phases to treatment - phase 1 which covers ALL of the appointments, her orthoses, the tomograms, the EMG, and the TENS unit. Phase 2 pricing depends.
I am going to fly down there for a visit in the upcoming months for treatment. I went for my 2nd NUCCA chiro appt, but this time was just a lecture, and another scan, and I go back on Monday for the actual adjustment. Ugh. I need some relief - I guess I'll take another magnesium and a Motrin, hopefully I can feel ok in a little while.
Re: TMJD has ruled my life for 6.5 years and I want my life back!
Hello hapachik,
how was your phone consultation with Dr. Rojas?
how much was her treatment?
I've researched her online but there's not a lot of information about her.
but I'm sure she's wonderful.
and oh, I guess Dr. Pehling is supposedly really good, because
few months ago, my orthodontist recommended him, and yesterday when my mother went to see a dentist, she told him about my TMJ problem and the doctor said go to Pehling.
so I don't get the whole deal here, but I don't know if that should be trusted...... or not.
I don't know if I am missing the cure in front of my eyes and that questions me if I should go out of state. whatever.
Re: TMJD has ruled my life for 6.5 years and I want my life back!
Hi 8413670!
Sorry I didn't put the amount on the last post - she charges $3500 for the first phase - which includes everything - all visits, orthoses, tomograms, tens therapy, emg, etc. And, she was willing to do payment plans without interest - she spreads out the cost over a 4 mo period.
I honestly can't afford to go until a few months from now, and I am praying that the chiro treatments will help, so I can go back to work. I have to pay out of pocket for everything, since our insurance plans don't cover neither chiro or TMJ, so that's the primary drawback. And, I am not working right now, so things are a bit tight financially - unemployment compensation is not much.
I read that Dr. Pehling was voted as one of the best, well according to Seattle Met Mag and his peers. I thoroughly read his website and see that he treats TMJ exclusively, so initially I had wanted to go his route. However, after attempting to contact him twice, and not hearing anything back - kinda put a bad taste in my mouth.
If you go his route, please let me know how everything goes. I can tell you from personally speaking with Dr. Rojas, she was extremely informative, and genuinely sympathetic - because she's had it herself. Oh, and she's the president of the ICCMO, for the US - so, her credentials are spot on! She does feel though that TMJ is not just a "TMJ" issue; that it is very complex involving various muscles and areas of the body - head and neck. She was able to help a girl get disability, and another person get reimbursed for a little more than half of the costs.
Re: TMJD has ruled my life for 6.5 years and I want my life back!
So, I went to the NUCCA chiro today (Dr. Yardley), and he gave me my results and action plan for treatment. I had my first adjustment too, and felt better, but extremely tired afterward, so I went home and slept for a bit. I still don't feel great, probably because my neck / head / body relationship is in defunct with each other, and it's like my body wants to go back to it's contorted ways. This is probably why I need to see him 4x's a week for a month, then 3x's a week the next, and then less and less, as long as my body can hold the repositioning. It did lessen my muscle spasms in my neck a great deal; my triggerpoints feel less knotted, and I feel less "stressed", less "anxietic", which is a great feeling for once!
Thank goodness he has payment plans too. I am grateful for that.
I desperately hopes this helps enough so I can go back to work, and hopefully see Dr. Rojas sooner than later!
Re: TMJD has ruled my life for 6.5 years and I want my life back!
Hey hapachik,
it's great to hear you are feeling better!
I too wish my neck muscle spasms and all of these crackling bone noises would alleviate a bit.. aha I'm probably just dreaming on. Anyway, few days ago I've searched NUCCA chiro in this area and I've found Dr. Yardley as well. and I'm so glad he's in my area. maybe I should give it a try?
and oh, since my bone structures are resulted from the bad bite / poor jaw stabilization I have currently, I don't know if I should give it a try RIGHTAWAY for the chiro, because I mean I'm sure it will lessen a bit, but until my bite is in the right position, the body will not follow.. so I don't know if I should wait or not because it's like pouring water into a broken glass.. if you know what I mean..
and honestly, I am like, so hesitant in choosing the doctors.
I've researched Dr. Rojas online but let's say Dr. Spahl has like 100 pages of information about him & his tmj, etc, Dr. Rojas had so little info compare to spahl. maybe like, 10?
but Her cost is totally reasonable, because it includes examinations+orthopedics+etc. but I just don't know if she has some-what successful rates or if she can fix me.
and you know, it'd be a LOT nicer to see a doctor in Cali, rather than in Minnesota.
Re: TMJD has ruled my life for 6.5 years and I want my life back!
Quote:
Originally Posted by 8413670
Hey hapachik,
it's great to hear you are feeling better!
I too wish my neck muscle spasms and all of these crackling bone noises would alleviate a bit.. aha I'm probably just dreaming on. Anyway, few days ago I've searched NUCCA chiro in this area and I've found Dr. Yardley as well. and I'm so glad he's in my area. maybe I should give it a try?
and oh, since my bone structures are resulted from the bad bite / poor jaw stabilization I have currently, I don't know if I should give it a try RIGHTAWAY for the chiro, because I mean I'm sure it will lessen a bit, but until my bite is in the right position, the body will not follow.. so I don't know if I should wait or not because it's like pouring water into a broken glass.. if you know what I mean..
and honestly, I am like, so hesitant in choosing the doctors.
I've researched Dr. Rojas online but let's say Dr. Spahl has like 100 pages of information about him & his tmj, etc, Dr. Rojas had so little info compare to spahl. maybe like, 10?
but Her cost is totally reasonable, because it includes examinations+orthopedics+etc. but I just don't know if she has some-what successful rates or if she can fix me.
and you know, it'd be a LOT nicer to see a doctor in Cali, rather than in Minnesota.
please keep us updated.
Hi 8413670! It's my first week of NUCCA chiro (with Dr. Yardley), and it's been going pretty well. I've had 2 adjustments. The other two days were just to see how my spine is holding, and it's been holding the position pretty well, until yesterday when my whole face / head felt horrible. I even had a headache / migraine last night. I woke up this morning ok, but as the morning progressed, it was horrible. I felt like I literally had to hold my head on my neck. And, the left side of my jaw felt worse than the right side.
So, I went back to the chiro this morning and he did the 2nd adjustment this week, and I felt much better. It's so bizarre; it feels like nothing really, except you can see the amount of force / pressure that the chiro puts in his arms / hands and you hear the tiniest "pop", but you don't feel a thing, except for relief ! He did that about 4 times, and after the 3rd it felt like a weight came off. I can't explain it, but it felt better. I just hope it lasts through this weekend.
Oh, and about Dr. Rojas, I know she only has a few pages on her website. But, IMO sometimes you can't just go with the "amount", it's about the importance of what they are trying to convey. It's a quality vs. quantity thing - I mean, if it's all just redundancy, it's a waste. When I spoke with Dr. Rojas, she explained in great detail the procedure, and when I asked how her success rate was, it's about 95%, the other 5% that she doesn't have success with are the ones who have had surgery. And, I personally do not want to deal with the docs who could care less (like how I tried to contact 2 TMJ docs here that never called or emailed me back ), and just nickel and dime you to death.
You are in such an early phase that I would recommend finding someone soon before it gets worse. Let me know how it goes with Pehling, if you decide to see him.
Re: TMJD has ruled my life for 6.5 years and I want my life back!
HI---Hapachik---I totally agree with you about what you said about information on the internet about tmj docs. Some of the greatest tmj doctors dont' even have a website, and some of the worst, have all the info. in the world. You can't go by info alone..IMO---a good recommendation mean the world to me in finding a good doctor. Take care all, and good luck with your decisions.
Re: TMJD has ruled my life for 6.5 years and I want my life back!
Hi all. I'm curious about something. So, say you go through the 1st phase - the orthodic. Then, once that becomes stable - you go through phase 2, which is either crowns, braces or a permanent orthodic. It could still slip out of place, right? I mean, say you do phase 2 and you get braces. The braces come off, and a couple of years later you get stress in your life, or something happens and you start grinding your teeth again, or something gets your jaw out of whack. What happens next? Do you have to start all over from phase 1 again? That's what concerns me.
I've been through braces 2x's already. The 1st time wasn't done right and I still had an overbite. The 2nd time was recent - the braces came off in July 09, right before I came to WA. I couldn't bare to go through another 3 years of braces.
Oh, and now going through the 2nd week of NUCCA chiro treatments - my left side of my body feels out of place - before it was my right side. I know my body is all twisted, and maybe it's going back into place and that's why I'm feeling it on the other side - like tight muscles - all upper-back and neck?!? I mean, I do feel a bit better - I can go out, but I still get dizzy feelings, esp. when I look up, drive, go to stores that have fluorescent lights - like Wal Mart and Target, or chewing and swallowing.
BTW - has anyone tried Meclazine (dramamine)? I bought some, and scared to death of trying it. I bought the store brand ($4 for 8 25mg tabs), and cut one in half yesterday, but I'm chicken.
Re: TMJD has ruled my life for 6.5 years and I want my life back!
Hey Hapachik----Yes, the concerns you have about the different phases are really legitimate quesitons..I asked my doctor early on about maintaining the new jaw position, and teeth. I'm sure you could email a doctor about specifics, but what usually will happen is this..Phase 2 is never started until your jaw is stabalized, and the muscular issues are much, much better. This is usually after months and months of being in the orthodic..If you do this, you will see that there is no going back after this. Your teeth will not meet like they used to, and you probably will not be able to eat without the thing again, (after phase1). In phase 2, after the symptoms are greatly reduced, you can begin to look at what needs to be done with your teeth. In my case, I need major expansion done, and braces to move my teeth to meet my new mandible position. What is good about the Functional Ortho's are is that they do not "tork"...or put stress on the teeth when they do ortho..this limits the chances of root absorption, and problems associated with that. Also, when phase 2 is done, you probably will always need to wear some sort of nightguard to maintain the new positions of the teeth, and to protect them from when you clench at night, or grind, if you do that....I've never heard of a Functional dentist ever leaving a patient after phase 2 without some sort of nightguard to protect their work. THis is what I will have to do as well. If you follow their directions, and wear the retainers if you go through braces, and wear the nightguards, you should be fine. I have heard of people going hog wild after treatment, and eating hard candy, crunchy hard foods, and having flare ups that needed to be addressed. YOu need to be careful, and baby your jaw, especially if your discs have damage, or arthritis, etc....it depends on how bad your case is from the beginning of treatment. take care..
Re: TMJD has ruled my life for 6.5 years and I want my life back!
I am just frustrated. My face and neck have been feeling tense all morning and I was trying to relax my jaw muscles and when I do that I feel horrible (I was sticking my tongue to the top of my mouth and allowing my jaw to just "hang") - why are my muscles fighting against me??? Arrrrrrrgh!!
Over the past 3 weeks, I have undergone NUCCA treatment. The first week was just xrays and testing. The past couple of weeks I've been adjusted about 4x's. I do feel more energetic with treatment, but honestly I feel as if it is doing absolutely nothing for my TMD issue.
I think I am going about this backwards. I think I desperately need TMJ treatment 1st, and then maybe chiro. I just wanted to get some type of immediate relief so I can go back to work and function - but it isn't working! I have emailed Dr. Rojas to see what she thinks. At least if I were to do it this way, I could save the $630 mo. that I am spending now on chiro and see Dr. Rojas.
BTW, I was talking with my sister the other day and she had similar symptoms, but definitely not to any degree of being close to where I am right now - she was told it was her wisdom teeth and had them removed and felt immediate relief. I still have my two bottom wisdom teeth that are impacted and sideways (they top of the teeth literally is lying sideways - facing my other teeth). I also emailed Dr. Rojas to get some advice. Could my problems be caused by impacted bottom wisdom teeth? Has anyone had similar issues and had their wisdoms removed? I'm afraid of the extraction - going under especially.
Re: TMJD has ruled my life for 6.5 years and I want my life back!
HI R.....I think you should definitely get Dr. Rojas's opinion on your wisdom teeth. Doing an extraction during tmd issues is extremely painful sometimes, and can cause more problems if you are first not stabalized...IMO. I know so many people that actually got tmd from a wisdom tooth extraction. Also, you are correct in assuming that you should start tmd treatment "before" any xtra treatments, like chiro, cranial, PT....If your jaw is NOT stabalized, and you try and stabalize your neck, etc...it will not hold at all, and you will be better off putting your $$ into the orthodic, then after you get stabalized, start the PT, chiro, etc. (i learned that the hard way...)
so I'll be traveling outside of WA.
Re: TMJD has ruled my life for 6.5 years and I want my life back! 
