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Old 02-01-2010, 03:03 PM   #1
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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!

 
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Old 02-01-2010, 04:10 PM   #2
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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.

Last edited by nell670; 02-01-2010 at 04:22 PM.

 
Old 02-01-2010, 04:53 PM   #3
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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.

 
Old 02-02-2010, 07:22 AM   #4
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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.

 
Old 02-02-2010, 11:00 AM   #5
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Re: TMJD has ruled my life for 6.5 years and I want my life back!

Quote:
Originally Posted by jmitchell View Post
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!

 
Old 02-02-2010, 10:52 PM   #6
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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.

 
Old 02-03-2010, 07:11 AM   #7
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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.

 
Old 02-03-2010, 11:16 AM   #8
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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.

Take care!

 
Old 02-04-2010, 01:59 AM   #9
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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!

 
Old 02-04-2010, 04:21 PM   #10
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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.

I hope you are feeling better!

 
Old 02-06-2010, 11:09 PM   #11
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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.

when are you planning to visit her?

Last edited by nell670; 02-06-2010 at 11:13 PM.

 
Old 02-07-2010, 02:15 PM   #12
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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.

Anyhow, take care, and have a great weekend!


Aloha!

 
Old 02-08-2010, 10:39 PM   #13
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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!

 
Old 02-08-2010, 11:43 PM   #14
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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.

please keep us updated.

 
Old 02-12-2010, 12:14 PM   #15
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Smile Re: TMJD has ruled my life for 6.5 years and I want my life back!

Quote:
Originally Posted by 8413670 View Post
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.

Have a nice weekend!!!

 
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