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Old 06-22-2009, 06:44 PM   #1
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My journey

I'm going to post a bit of my journey. It is nice to have something to refer to when starting the treatments. Even if it is just my journey.

I got my splints last week, a lower splint for during the day, and an upper for at night. Both are acrylic type material molded from impressions of my teeth, clear, so no one really notices I have it in (except if my tongue gets tangled, then I slur, and drool and generally make a fool of myself. Gets a good laugh, that is for sure!). The night splint covers just the front 8 teeth or so, and has blocks built below the middle two teeth to keep from clenching the back teeth at night. I was told that the splints are 24/7 unless brushing. If I'm doing something during the day where I catch myself clenching (I was mashing berries for jam the other day and caught myself clenching) then I am supposed to switch to the night splints. I didn't because with the night guards I drool a lot more, and I didn't want to add anything extra to the jam (I know, I'm sorry, gross! )

I've had xrays every time I've been in the office to make sure the jaw is placed in the joint properly, so probably 4 sets so far.

He also strongly suggested using chondroitin/glucosamine and vitamin C to help the healing process.

Side effects: The splints are molded perfectly, so there is no issue with rubbing or raw spots (thank goodness for that). The bottom splint is tight, so takes a bit of wrestling to get out.

I noticed tonight after brushing that my back teeth are not as sure where to go anymore. Of course now I am used to having that extra 1/2 inch on top of the teeth, and the splint guides the back teeth into the proper position, so of course my poor mouth is confused!

It is difficult to eat, so I've been sticking to soft foods or foods I can swallow without too much effort. And since it takes so long to eat I've not been eating as much as usual. I haven't lost any weight though (I really can't afford to lose too much). I have had the most intense craving for potato chips though - isn't that the way it always goes?

I have experienced nauseau every morning. Don't know why, maybe the night splint is pushing on a nerve. I tend to get nauseous easy, so I'm not surprised at all by that.

I have more muscle stuff happening in my face, I'm guessing because the jaw is in a different position, and will eventually build up enough to keep the jaw where it is supposed to be.

Took a few dayssshhh to feel even a little comfortable ssshhhpeaking. It wa-sssh a lot of work to ssshay my essshh'shhh!

My kids..."Mom, chew with your mouth closed", "Mom, we don't want to see what you are eating", "Mom, stop mumbling". Every thing I have said to those kids over the years is coming back full force...and they are enjoying every single second!

No change yet in the muscle pain in my neck, shoulders, etc. It's only been less than a week, so I guess I have to give it time.

That's it for now. Please let me know about your experiences too!

 
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Old 06-23-2009, 01:02 AM   #2
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Re: My journey

hi

I'm really sorry to hear about your discomforts...
I have already written about my story in these threads. it started with a never healing tooth, then extractions more than 10 months ago. I have been to many doctors (dentists, oral surgeons, ENT drs, neurologist), had exams on my head (MRI, CT)... nothing has been found and no medicine has brought any relief.
then in March a dental technician, who deals with splints, told me I have bruxism and a bad bite. He started a splint therapy, but nothing has improved. He adjusted it 4 times.... recently I have lost touch with him, he told me he would call me when it's appropriate for him to do the next adjustment but he hasn't called.....I guess he gave up on me ((((
Then the chiro... he told me there's nothing wrong with my jaw, but my neck.... I've been to him 6-7 times, first I felt slightly better, but then much worse....so I stopped seeing him. since then I have had pain in my neck and shoulder, too....
so I went to my GP to ask for a neck Xray and a blood test. the Xray showed arthrosis and a straightened neck.... my GP also said that my neck is very stressed.... The blood test results were good.
now today I'm going to a reumatologist....
I'm so fed up and scared.... I feel that I'm just going round in circles in vain..... nobody and nothing will help....I'm in constant pain....

 
Old 06-23-2009, 04:40 PM   #3
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Re: My journey

Quote:
Originally Posted by pearl1975 View Post
hi

I'm really sorry to hear about your discomforts...
I have already written about my story in these threads. it started with a never healing tooth, then extractions more than 10 months ago. I have been to many doctors (dentists, oral surgeons, ENT drs, neurologist), had exams on my head (MRI, CT)... nothing has been found and no medicine has brought any relief.
then in March a dental technician, who deals with splints, told me I have bruxism and a bad bite. He started a splint therapy, but nothing has improved. He adjusted it 4 times.... recently I have lost touch with him, he told me he would call me when it's appropriate for him to do the next adjustment but he hasn't called.....I guess he gave up on me ((((
Then the chiro... he told me there's nothing wrong with my jaw, but my neck.... I've been to him 6-7 times, first I felt slightly better, but then much worse....so I stopped seeing him. since then I have had pain in my neck and shoulder, too....
so I went to my GP to ask for a neck Xray and a blood test. the Xray showed arthrosis and a straightened neck.... my GP also said that my neck is very stressed.... The blood test results were good.
now today I'm going to a reumatologist....
I'm so fed up and scared.... I feel that I'm just going round in circles in vain..... nobody and nothing will help....I'm in constant pain....
Post where you live and maybe someone can give you a good referral to a tmj specialist. It definitely sounds like you have symptoms, and can't hurt to get evaluated. Good Luck..

 
Old 06-24-2009, 12:12 AM   #4
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Re: My journey

thanks, but I live in Hungary, East-Central Europe, so I doubt that anybody can recommend me a doctor from here......
I've been to the reumatologist, she was very kind and helpful. she thinks that my neck arthrosis can not cause my jaw pain, so we face 2 different problems. she thinks I overstressed my jaw and I might still do. and I also stress myself, which is understandable with constant pain... I'm going to get ultrasound therapy into my jaw and neck, I got muscle-relaxant, 2 different creams and she suggested exercise.
If these things do not help, she is going to do more examinations into my jaw (Xray, UH)....although the previous exams did not show dislocation, she thinks they might not have been detailed enough....

 
Old 06-24-2009, 08:05 AM   #5
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Re: My journey

Quote:
Originally Posted by pearl1975 View Post
thanks, but I live in Hungary, East-Central Europe, so I doubt that anybody can recommend me a doctor from here......
I've been to the reumatologist, she was very kind and helpful. she thinks that my neck arthrosis can not cause my jaw pain, so we face 2 different problems. she thinks I overstressed my jaw and I might still do. and I also stress myself, which is understandable with constant pain... I'm going to get ultrasound therapy into my jaw and neck, I got muscle-relaxant, 2 different creams and she suggested exercise.
If these things do not help, she is going to do more examinations into my jaw (Xray, UH)....although the previous exams did not show dislocation, she thinks they might not have been detailed enough....
Look at these associations--American Academy of Craniofacial pain
--American Academy of Orofacial Pain
--American Academy Association for Functional Orthodontics
See if there are any doctors somewhat near you, it's better to have them belong to these assoc. because they will have the best training. You can contact them yourself and ask for help to find a doctor, or look online and see if they have members near you. Good luck...

 
Old 06-24-2009, 08:08 AM   #6
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AndreaL HB User
Re: My journey

I think this is a good idea for each of us to share our TMJD journey's, we won't feel so alone in it when we have others to read and know that someone else out there is going through the same pain; discomfort; fears and frustrations.

My journey began when I was 25 (I am now 33), a click started in my left side of my jaw, I thought nothing much of it because it didn't really bother me at the time. I had 2 visits to the dentist that same year, once for a filling, the other for a tooth extraction, after both visits my jaw really ached on both sides and my bite was different with my front teeth not meeting as they usually did. However because this only lasted a day or 2 after the surgeries I again didn't think much of it so never sought any help for it.

By the time I was 28 I needed to see a dentist again for a baby tooth that was loose and about to fall out. I did mention the click because it had become worse by now and my mouth also began to feel uncomfortable with chewing becoming difficult and even sawllowing, ith the feeling of a lump always stuck in my throat. I was told at this appointment that I had TMJ, I was referred to a dental hospital where I was looked at by 4 surgeons and a handful of dental students, they were all really intirgued by my very asymmetrical face and took measurements etc. I was spoken over and not directly to, they spoke dental jargon that I didn't understand and concluded at the edn of my appotinemtn that I would need 10 years on going surgery, including cosmetic to reconstruct my chin etc to give me a symmettrical face. It all sounded extremely scary so I didn't go back for any further treatment.

On New Years day this year, my jaw clicked (which wasn't unusual, I have become used to force clicking it myself to try to get some comfort, even if just for a few mins before force clicking it again) but this time it clicked differently leaving my bite completely off, I could barely ope my mouth to speak and it hurt like mad! I first saw the Dr who as usual said it wasn't his field of practice and couldn't help me, I saw a dentist who said something had aggrivated my TMJ ad referred me back to the dental hosiptal. This time I was told all I needed was a mouth guard to stop my teeth from grinding.

Puzzled and fed up of the discomfort and many other symptoms that had now developed throughout my body I decided to look more into TMJD myself and I emailed a number of Practitioners claiming to be experts in treating it.
I am now seeing an Osteopath who treats my symptoms affecting the rest of my body, he has really helped!! I am now free from shoulder aches and pains and headaches are less and less. My osteopath was able to ut me in touch with a private dentist who gave me a consultation and proposed a 5 year treatment plan using splint therapy and braces.

I feel that I have met two practitioners who really know their 'stuff' and I feel confident in them helping me. Out of interest though I went to my NHS dental hospital appointment today and told them of the private care I plan to follow up, I was told 'good on you, you are taking the right path', the NHS won't offer the same treatment, I asked why and his response was basically that there are too many people suffering with TMJD and it would be too time consuming and costly for the NHS. So instead their answer seems to be giving people a mouth gurad and showing them the door, until eventually over time it gets so bad that they'll need jaw surgery.

Sorry it's long but that's my journey.

 
Old 06-24-2009, 03:52 PM   #7
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Re: My journey

Thanks Andrea!

I didn't include my beginnings, so thank you for that.

In the beginning for me...wow, where do I start. Well, 4 years ago I had surgery for a cholesteatoma that had developed in my left ear. For about 2 years previous to that (probably more when I really think of it) I had pain and the feeling of tight muscles in my left ear, jaw and extending down into the throat below the jaw. The surgery did not relieve the pain, and when I asked the ENT about it, his response was that it shouldn't still be sore, and it was probably a dental issue. I mentioned it to my dentist who said that there was not a dental issue (see the circle already?) So as the years have gone on, the pain increased, and then I started having muscle spasms in my neck, shoulder, and a feeling of pressure along my cheekbone - sometimes pain as well in the face. Again, "It's a dental issue", "No it isn't". Even the chiro jumped in with "I think it is just your cross to bear in life". I don't think so!! The muscle spasms are weird, in that it is cyclical, some days are not too bad, some days are excruitiating and will be like that for 5-6 weeks on end. I can remember in high school sitting in class and feeling my left shoulder and neck spasming and not being able to move for days on end. Even now, I will "sleep wrong" and wake up with a spasmed shoulder/neck.

Anyway, I belong to a small concert band, and we stared the season in September as usual. I noticed that my emboucher was not as strong as it had been, and as the season progressed I found that the pain and spasms were becoming unbearable. I had to quit playing in March, I got half way through the second song of that concert and thought "Oh crap! I'm not going to make it!"

So I quit the band, and my ENT found out. He knew how important it was for me to be in the band, asked about it every time I saw him. I explained about the pain and spasms in my face, neck, shoulders, and he immediately asked if I had been seen by a neurologist. I fortunately had already made an appt, but there was a 6 month waiting list.

In the meantime, I decided it was probably a good idea to try and rule out other issues before I saw him so he didn't brush me off as well! I had a CT to rule out a re-growth of the cholesteatoma (which was clean), I tried acupunture (which caused me to have uncontrollable tremours through my left shoulder and head, so didn't go there again). Chiro, massage every week to two weeks. It was just getting ridiculous! Normal people do not have to go for chiro every week or so. The chiro suggested I try and rule out TMJ again before my appt with the neuro. I went to my family dentist who brushed me off again, tried to sell me a $500 night guard, and told me it was all muscular from clenching at night. He also said that my appt with the neuro would be a waste of time, and that I would be back for the night guard, and he would be more than happy to sell me one. That was the moment I decided that I would never, ever grace his doorstep again!

So, I referred myself to a TMJ specialist, and have just started wearing day/night splints.

The rest I will post as I go along. I too am hoping that by posting my experiences it will help someone else along their journey. And that others with different experiences can share.

 
Old 06-25-2009, 02:43 AM   #8
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Re: My journey

I just wanted to add also that I found it very frustrating not knowing the cause of my TMJD and I know a lot of people who have sufferred for years still don't know their cause. I was always asked at every dental appointment if I could remember ever having a blow to the face, such as being involved in a car accident or a fall to the ground landing hard on my face, but I never have experienced any kind of blow to my face.

It wasn't until I saw my osteopath that he asked about my birth, how I was delivered, which was by forceps and after he actaully assessed me, he says he is very confident and would be happy to state in writting that the cause of my TMJD is the way I was pulled, twisted and turned during my delivery. The way he explained it made absolute sense to me and I find it a relief to now understand the cause but I also find it interesting and frustrating that clearly so many babies are born this way and after the obvious marks, red spots of where the forceps were applied have gone, Mothers and Doctors believe that all is well with that baby. In most cases the baby probably is OK but for some, like myself, as they grow up and the bones of the skull and face develop, they'll grow in the wrong direction and then as in my case, during their 20's symptoms of TMJD will start to appear.

I don't mean to worry Mothers or people who were born this way, I'm simply sharing what I believe is the cause of my TMJD and I acknowledge that not all individuals born this way will experience problems. I will however most definitely have any of my children born in such a way assessed asap by an oseopath because should there be any problems they can be fixed whilst a baby, within a few weeks, preventing problems such as TMJD later in life.

 
Old 07-06-2009, 05:20 PM   #9
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Re: My journey

Hello again everyone. Just wanted to do a quick update.

For a little while, I was starting to feel like I was getting somewhere. I have not really seen any improvements per se, but was starting to feel like I was headed in the right direction.

Well, the other day I woke up feeling like my "old" self again. I woke up feeling like I "slept wrong", muscle tightness/pain in my neck/shoulder/face, etc. Yesterday was a little worse, and today has not been a good day at all. It is starting to affect my mood. Geez, I don't want to go back to that again.

I know that it is recommended to go for massage/CST and chiro during the splint treatment, but I can't make my schedule and their's work out. I have tried twice in the last 2 weeks to schedule a CST appt, and she is going on a 3 week vacation, leaving me without a treatment for well over a month. My regular massage therapist could book me in, but she doesn't do CST.

I just feel like I'm going in circles right now. I apparently need to find a CST who has night time hours, and I have to wait for my regular chiro to get back from maternity leave. Then again, I was seeing her every 1-2 weeks, so maybe her treatments weren't helping. I don't know!

The splint, I believe, is working though. When I take it out to brush, I feel like I have to be careful, like the joint is very loose. Also I feel like I have to take great care when I yawn. The night splint...I have figured out a way to clamp down on it. By the morning my front top and bottom teeth are sore from clenching down. All things that I will be mentioning to the dr. on Wednesday when I see him.

Hope everyone is having a good evening.

 
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