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Mianderz

New User, Becoming EHEALTHy
Joined: 24 Oct 2007
Posts: 10
Location: Syracuse, NY United States
New Here: Telling My Story
Posted: 10-24-07 19:43pm

So, I've never done anything like this before but I thought I'd give it a try. This is my story and I'm sticking to it.

I'm 17. Young, right? Well I feel a lot older, like 35. About a year and a half ago, I noticed whenever I woke up and brushed my teeth I could hear a popping noise when I opened my mouth. Some time later, probably no more than a few months, my face would start to hurt whenever my jaw popped and soon enough I had constant headaches. I took some Aspirin and roughed my way through my junior year of high school.

Junior year was in my opinion, the hardest year a high school student goes through. I lived with the headaches and jaw pains thinking it was just stress. Well, I went to my regular dentist [I have an orthodontist because I did have braces for 10 months in 8th grade] and told him of my pains. He got to thinking and told me I might have TMJ.

Honestly, I had never heard of it before then so he told me anything and everything about it. As it turns out, looking at my back teeth [12yr molars, etc] I grind my teeth severely at night. At first he said not to worry about it, that I would be fine.

Fast forward by half a year. My mouth still hurts, and even more so than before. He made me a mouth guard. [The retainer I had from my braces I subconsciously spit out at night and broke over a period of less than three months] He did impressions and it took forever to make so in the end, he gave it to me for free. I took that home and wore it at night like he told me to. Three days pass. I wake up on day four, take out the guard and notice a huge crack that goes right down the center of the curve. I broke it in half.

So, my dentist says see such-and-such. He's an ENT and oral surgeon. That doctor didn't seem at all interested in me and gave me a prescription for an anti-inflammatory and 6-8 weeks of physical therapy. I hate taking pills but did it anyway and it helped, just not in the long run. At the beginning it gave me short term relief for a few hours then slowly but surely it didn't seem to do anything at all. The therapy helped, though. Three days a week of working my jaw with therapists I did not like.

Well here I am, a year later and in so much pain I cannot eat. Last Friday I saw my regular dentist for a routine check-up/cleaning. They said I had three or more cavities! The nurse was in my mouth no more than ten minutes and my jaw hurt so bad I had tears in my eyes. She called the doctor and he said to see my ENT. My wisdom teeth are coming in and there is absolutely zero room in my mouth for them to come in. If I feel in the back of my mouth I can feel them trying to surface. They both said to have my wisdom teeth removed. Well the ENT is an oral surgeon but won't pull teeth so I have to find yet another doctor...

So, the ENT gave me two prescriptions: one for an antibiotic [apparently where my molars are coming in there's a chance there could be an infection?] that's a horse pill. I have to take two a day for 7-10 days. The other is for pain; an anti-inflammatory that puts me to sleep in a half hour flat which I can't take during school even though that's the time I have the most pain. He also said that I have to come back in 2 weeks if I don't feel better and he'll give me a shot at the site of pain. I'm not sure what the shot is for, he didn't specify and I didn't want to think of it at the time. I'm going to call him tomorrow and ask about it. I've never been afraid of needles until now.

I'm so stressed with college next year and working and home and now this! If you've actually read everything I just typed, thank you. Thank you so very much. I feel like no one even cares! My mom just says to take the pills and then walks away. My dad ignores me altogether and my sister doesn't know what's going on. Even my friends are getting annoyed with me always saying my jaw hurts that they too ignore me. The only person who cares is my best friend. I just need someone who can relate, I don't know anyone else that knows what this is like...

Thanks,
Miranda
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samrella

New User, Becoming EHEALTHy
Joined: 25 Oct 2007
Posts: 17
Location: Taunton,Massachusetts,
I'm New to This Forum Too
Posted: 10-25-07 07:44am

Hi Miranda,
Welcome
I'm new to this kind of online medical problem website too. I deal with jaw, ear and back pain daily. Try not to get too depressed with this. Your very young to have to deal with such pain. I'm 44 and have had chronic pain since I had a slip and fall accident at the age of 27. I have TMJ pain also and I find that stress dose make it worse. Ibuprofren does help a little with the pain. I suggest you find a great doctor in your area because unfortunately this could be a lifelong problem. Hopefully in your case it's just teeth problems and not your TMJ. And feeling like people don't care about your pain doesn't make it better. Some people have never had to deal with bad pain. Lucky them! Unfortunately I have lost friends early in my life because they didn't want to be around someone always in pain. They didn't say that to my face but I just learned early on that people that have never had to deal with pain don't really know what to say to you. And at your age kids just want to have fun. Don't loose your friends because of this. I have just had my friend list get smaller as time goes on. The real friends will stick with you through thick and thin. Enough about life and friends right. So have you tried moist heat? There are facial exercises also that may help you. Please find a great doctor and I hope this health forum helps.
Take care,
Sandy
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Tmddyan

Moderator
Joined: 13 Jun 2006
Posts: 4349
Location: post falls, id usa
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Posted: 10-25-07 12:24pm

hey both of you----i can help you find doctors. pm me if you need anything or email. whatever you want. Heat and ice does work. Facial exercises help alot if you have limited opening. dont give up hope. ive had this all my life and have found answers. so hang in there there is light at the end of the tunnel
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samrella

New User, Becoming EHEALTHy
Joined: 25 Oct 2007
Posts: 17
Location: Taunton,Massachusetts,

Posted: 10-25-07 13:50pm

Thanks for replying. Do you have any info for fibrous dysplasia of the temporal bone? I have had a bone tumor removed from my temporal bone and I'm trying to find a doctor who might be able to give me advice on what can stop this bone from growing. I was told it is metabolic. So something in my system is causing this to happen. The pain is constant and I'm not looking forward to having these operations on my jaw and ear every several years to remove the growth.
Any suggestions on who I could ask questions to about fibrous dysplasia?
Thank you for your concern.
Sandy
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Mianderz

New User, Becoming EHEALTHy
Joined: 24 Oct 2007
Posts: 10
Location: Syracuse, NY United States

Posted: 10-25-07 13:51pm

Thanks so much for your comments, it's much appreciated.

Yes, I have done facial exercises in PT, and plenty of them. Most of them hurt so much I can't do them but I try. And I alternate between moist heat and ice packs. My school has nothing like a heating pad so I use bagged ice cubes there and at home I always have the heating pad on. Or I'll damped a hand towel with warm water. There have been days that even the wind blowing outside hurts the right side of my face.

And I'm sad to say it, I have lost so many friends who have indeed told me to my face that I complain too much. They haven't been through this though, and they aren't real friends. But my best friend in the whole wide world, Megan, has been there for me at any given time, She just had emergency surgery to have her gal bladder removed and I was there with her.

Two months ago I checked my weight. I was 132 pounds.
Currently, I weigh 101 pounds.

This has helped me a lot though I can't help but be depressed. I feel so bad all the time, I've been losing sleep and failing classes and forgetting everything. I just don't know what to do! So, I saw the school psychologist today. She honest to God thought I didn't have a jaw problem and was going anorexic. She pestered me to no end and it pissed me off [pardon my French]. Now she's called up my parents and is asking all kinds of questions about what I'm eating and yada yada yada. I wanted help with my jaw, not to be accused of starving myself!

Thanks Dyan, a good doctor around here would be much much much appreciated. One of my current ENT's offices [he has three] is in Camilus which is a 45min-1hr drive for me. My parents are getting annoyed with all the doctor visits and co-pays they're paying. I feel like they don't care; I know they do, they're my parents after all. I'm so frustrated and have so much to handle. I wouldn't wish this on my worst enemy...
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messicamouse

New User, Becoming EHEALTHy
Joined: 12 Sep 2007
Posts: 18

Posted: 10-25-07 22:55pm

i had that same problem with the pills i was given knocking me out for long periods of time. now i am only taking muscle relaxors at bedtime, i recommend getting on some of those, you should ask your dr the next time you go. and i take my anti-inflammatory only when it is hurting. but now that i have my splint that isnt often so i just pop some motrin.

you really need to get to a dr that has a better understanding of tmj. you should prolly also try to have a serious talk with your parents, maybe show them some of these websites. they really need to understand what you are going through and be on your side. luckily i have a lot of support right now, and luckily my co-pays are really low. my splint only cost $95 and if a bill shows up from my health insurance (which it better not) my mom said she would pay for it.

i wish you the best of luck.
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catswold

Supporter
Joined: 10 Oct 2005
Posts: 404
Location: Flint, Michigan

Posted: 10-26-07 10:37am

Hi Miranda,
I'm sorry I haven't replied sooner. Carpal tunnel sure does mess up my computer time. Anyway, Messicamouse gave you some great suggestions to have a serious talk with your parents. Show or print out some information from both TMJ support sites and TMJ in general. It's really important for them to know that eating HURTS; that you aren't trying to lose weight. Do some research to get yourself very familiar with TMJ and then present your case to them calmly and rationally. It is almost impossible to keep the emotions in check when discussing TMJ, so I can only tell you to do your best. You really do need to find a dentist who understands and treats TMJ. Neuromuscular and Functional Joint Orthodics dentists seemed to understand more on how to treat TMJ, especially younger sufferers such as yourself.

There is hope and you cannot give up looking for help. You don't want to become 53-years-old and have severe degenerative joint disease or arthritis. Though I praise God that the pain is now manageable, I still have to be very careful. There are people who can help you.

In the meantime (while doing your research and talking with your parents), make sure to do certain self-help methods of treatment.

1. No gum chewing or eating ice.
2. Eat only softer foods (cottage cheese, mashed potatoes, eggs, cooked vegetables, oatmeal, etc.)
3. Use lots of moist heat directly on the jaw and/or neck, and interchange with ice in a towel for 15 minutes at a time. Use whichever one makes you feel better.
4. Try talking less.
5. Watch your posture especially in front of the computer. Do not strain your neck towards the monitor. Keep head over the body, reasonably straight back, shoulders down and back (not slouched) with chin down somewhat (not too far down). Really watch those shoulders.
6. See if your friend or a family member will give you frequent, short shoulder massages. Or get in a hot tub and RELAX!
7. Try holding your mouth in a certain position - lips together (or slightly apart), keep your teeth apart at all times (even eating if possible), tongue should rest on the roof of your mouth.

Be gentle with yourself. Relax, de-stress, but keep fighting for help. You are worth it. Don't worry about your friends all that much at this point. Concentrate on keeping stress OUT of your life as much as possible.

Please keep in touch with us and let us know how the talk with your parents goes. If you need me to write or talk to your parents or something - I WILL.

God bless you,
Carol
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Tmddyan

Moderator
Joined: 13 Jun 2006
Posts: 4349
Location: post falls, id usa
Thanks: 93
Thanked:63

Posted: 10-26-07 12:32pm

even though exercises hurt you need to keep it up and do the best you can. i have been and most of the time they are horrendous. but because of this i maintain my opening.

Mianderz , pm me and we will get you a good doctor.

and yes , samrella, I do have a suggestion about who to talk to for you. pm me or email me and ill give you the information.

we will conquer this. if you need anything let me know.
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grassy

Experienced User , Rather EHEALTHy
Joined: 13 Jun 2007
Posts: 116
Location: northeast
We All Care Here!!
Posted: 10-26-07 14:10pm

Hi, i'm cindy... i HOPE you feel better, stay on the board and like Dyan said, we'll get it conquered. Everyone here on the board Cares!!!! plus we are all here to help and are dedicated to finding relief, Most of us joined boards like this to help and give moral support. thats why we are here. So if you feel upset, thats ok, if you want to complain and vent thats ok too, we all understand, right everyone? hope you feel better!!!! cindy
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Tmddyan

Moderator
Joined: 13 Jun 2006
Posts: 4349
Location: post falls, id usa
Thanks: 93
Thanked:63

Posted: 10-26-07 15:24pm

yippers. im sure that most of us started off overwhelmed and confused and wanting answers too.
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Mianderz

New User, Becoming EHEALTHy
Joined: 24 Oct 2007
Posts: 10
Location: Syracuse, NY United States

Posted: 10-27-07 22:00pm

Thank you, thank you, thank you!! [Sorry I haven't been on in a little while, I've been doing community service hours for school]


The first thing I must say is to Catswold; I'm sorry but in your list of suggestions, number four is impossible! No offense or anything but I'm a teenage female, I love to talk!

Anyway, thank you for the other six suggestions. I quit eating meat almost altogether because it's so hard to eat. I hate chewing gum and haven't had it in years. [Ugh, Halloween is coming up fast! I'm going to have to trade a lot of my candy in IF I even go]

I've been using ice at school during classes and people give me the strangest looks but whatever. And whenever I'm home I use a heating pad but that makes it hurt even more; it makes my face feel swollen and tight.

Both yesterday and today I was helping out for community service hours by scaring in a haunted trail fundraiser. I was someone who was on the trail and scaring people though for the life of me I could not scream. I was supposed to jump out and yell. I did once and that was the last time. Apparently I opened my mouth too wide or something [and I have a high-pitched scream] but I could hear the snap of my jaw over the scream itself. Ohmigod, that hurt so bad I ended up leaving early to go home and cry.

I have tried talking to my parents about this whole thing and once more they seem totally unsupportive. I made an attempt to speak with my mom this afternoon before leaving for the haunted house again. I made a few factual comments [they were proven and true] She told me she was busy and to tell my dad. I went out to the garage, said one word and he told me to 'take it up with my mom' in his words exactly. I am seriously thinking they don't care at all! I know they do but come on!

So I'm at my best friend's house [the only one that seems to care] and venting to her and her dad. They care and let me know that. They went out of their way to make me lasagna and garlic mashed potatoes. HERE is where I feel like I'm home, I'm not ignored.

Anyway. Thanks again everyone. I'm checking my posture nonstop, doing all the excersises I can [I know I spelled that wrong] without hurting myself too badly, alternating between moist heat and ice, taking hot baths and TRYING MY HARDEST to relax. Luck my I have SAT's Saturday.................................. ..........................

Urg!
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Tmddyan

Moderator
Joined: 13 Jun 2006
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Location: post falls, id usa
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Posted: 10-28-07 15:46pm

hey let me suggest this --have your parents come here and read the posts here. perhaps if they see that more people than just you have it perhaps they will start thinking. my mom never wanted to admit that i had something wrong. i think it finally hit her how bad it was when she walked into my hospital room after surgery and saw me with tubes in my nose and hooked up too all kinds of machines and my head wrapped up.
If you want ill talkt o them as well.
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Tmddyan

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Joined: 13 Jun 2006
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Location: post falls, id usa
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Posted: 10-28-07 15:47pm

oh and you dont have to stop talking--ive talked for years with out moving my jaw at all.Ive gotten really good at it.Smile
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Mianderz

New User, Becoming EHEALTHy
Joined: 24 Oct 2007
Posts: 10
Location: Syracuse, NY United States

Posted: 10-28-07 18:08pm

Okay, I'll try that. Though I know my dad won't bother to read it, he hates computers and the idea of the internet. I'll finish typing up this response and try finding my mom. What exactly did you have surgery for though? I am soo dreading this shot my ENT wants to give me, the right side of my face hurts so bad I'm clipping my hair up to keep it off my side.

Not to mention I went grocery shopping with my mom today. I went through Wal*Mart and picked out an entirely new variety of foods for both at home and school just for me. It was all soft foods and no meat. Dinner tonight was a hot turkey sandwich [bread, mashed potatoes, turkey and gravy] Well I put a little of everything on my fork, put it in my mouth on the left side and bit down.
Holy. Sh*t.
I screamed as loud as I did in the haunted trail last night and tears came to my eyes. I spit out what was in my mouth, plugged in the heating pad and grabbed an ice pack. That was maybe an hour ago and I feel like all the teeth in my mouth will fall out if I eat anything. I looked in the mirror on my door and thought someone had put golf balls in my mouth it was so swollen. I'm getting so sick of this, I just want to have a real life and not have a midlife crisis at the age of seventeen!!!
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Alex101

New User, Becoming EHEALTHy
Joined: 19 Sep 2007
Posts: 11

Posted: 10-29-07 13:19pm

Miranda, most likely the reason you are having so much sensitivity and pain is because the TMJ is very close to the Trigeminal nerve, which has a lot to do with the sensations through out your face and head. When all this first started I also would get pain just from the breeze hitting my left side.

Here is something I read in a book and it has stuck with me, and I think about it a lot when I am feeling hopeless; "There is no storm on Earth that lasts forever". Eventually, despite all the pain and suffering and tears, you will get through this, one way or the other, this will all pass.

The beginning seems to be the worst of it, but once you learn to manage the pain, stay away from the things that cause flare ups, and learn ways to relieve stress, that alone makes the situation a bit better.

For example, I have been doing pretty good lately with my TMJ (Left side is my problem), however I just went and got a haircut and whenever the lady would pass the trimmers over my left side burn and temple, I would feel pain, and of course you start to get anxious, but I work through it using calming techniques. Getting a hair cut causes a flare up so now when I get home I will do some exercises and use some heat or ice to get it back down to a manageable level, even pop an advil if I have too. This is what I mean by "managing" your TMJ.

Also, no one complains of pain for no reason. No one allows something to stop them from doing the things they love with out a good reason. Psychiatrists will try to tell you its all in your head (They are half right), and just try to put you on meds. I have been down this road and it sucks. Don't let any Dr tell you it is all made up. This has to be one of the most offensive things a Dr can do to a patient. Yes, Stress does make it worse, but there is a root cause, and that is what needs to be treated.

One more thing is that you will find that after High School, the majority of people that were your friends will disappear. Its just the way life is as everyone takes different roads to where they want to get. This is when you'll realize that all you really need is ONE good friend, a BEST friend, and it looks like you already have that. Smile

Well, I hope my words have helped some. Make sure to pm Dyan in regards to finding a good Dr whom knows about and treats TMJ. They can help!

Alex
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Tmddyan

Moderator
Joined: 13 Jun 2006
Posts: 4349
Location: post falls, id usa
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Posted: 10-29-07 13:20pm

I had surgery to correct tmd. my jaw was too big for my lower. I had (bear with me ill explain)

1. maxillary osteotomy Le Fort I -----they cut out my top teeth and lowerd them so that my teeth touch all the way around

2. Bilateral coronoidectomy-----i had the bone just next to the condyle on both sides removed

3. Left arthroplasty--they opened the left joint and made sure that all was right and anythig that was out of place was put back to where it belonged.
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Tmddyan

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Location: post falls, id usa
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Posted: 10-29-07 13:21pm

oh and thanks alex for you comments:)
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Mianderz

New User, Becoming EHEALTHy
Joined: 24 Oct 2007
Posts: 10
Location: Syracuse, NY United States

Posted: 10-29-07 14:21pm

That is the one thing I am dreading more than anything. Surgery. I've never had an operation before and I don't want one.

It seems like my dentist, orthodontist and ENT just seem to give me a prescription for horse pills that are SUPPOSED to help with the pain and send me on my way. None of them care!

I have to get my wisdom teeth pulled, I've been told that by all three of them. I have no idea where to go to have that done because my ENT is an oral surgeon but won't pull teeth. Buzz kill, right?

And my parents wouldn't read this, either. I got a referral from someone through PM'ing and a phone number for a massage therapist but I'm so afraid I'll call her only to have my insurance not cover it or my parents refuse to take me.

I am so fed up with this! I want to eat and be able to sleep at night so I can concentrate in school! I haven't even finished a semester and I'm failing three classes already.
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Alex101

New User, Becoming EHEALTHy
Joined: 19 Sep 2007
Posts: 11

Posted: 10-29-07 17:01pm

Wisdom teeth are taken out by an Oral (Maxillofacial) Surgeon.

Honestly, I can't believe that your parents are not putting much interest (Gaging from what you've stated on here) into your health problems.
Have they given you a reason as to why they do not care? Its completely obvious that they have never dealt with a chronic problem. Lucky them... Rolling Eyes

I think your best plan of attack would be to convince your parents to at least pay for a consultation with a Neuro Muscular Dentist that is experienced in dealing with TMJ.

Perhaps if the Dr them self were to tell your parents whats going on, they would take you seriously?

Have you tried taking like an advil or two before going to bed?

Also, even though you should definitely get a bite plate made specifically for you, Wal Greens now carries a generic kind of bite plate you could try, to at least give you some kind of temporary relief. This may or may not help, I'm not sure.

Also, Chalated Magnesium helps with joint inflammation. Most local vitamin shops carry it. Read up on its benefits on the web.
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Tmddyan

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Posted: 10-29-07 17:13pm

insurance as a rule excludes tmd. i think they need to go jump in a lake. sometimes it does help for the dr. to talk to your parents.

dont worry about surgery---its a last option and most cases of tmd do not require surgery. I know that you told me you would like me to find a good doc in your area. pm me your zip so i can get on it.Smile

would your parents read something if you printed it out ? it might be that you wont get anywhere till you get out of the house and on your own. unfortunately. most dr.s will set up a payment plan to make it easy on you.
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