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