Conference turris::womannotes-v1

    
    	I really don't have any information, and I hope all goes well,
    	but you might want to check A) with Health Services in your
    	building.  B) Check with an orthopedic physician.  They are
    	usually the people, that I know of that handle bone work.
    
    		Mike
    

    You might try MARX:MEDICAL

    This won't help you right now, but when your surgeon gets back,
    whynot ask him for the names of his patients who have already undergone
    this type of surgery.  That way you could learn first hand what
    to expect and be assured that some of his patients survived this
    and perhaps are pleased they choose the surgery.
    
    In any case good luck.
    
    Alicia

    One of my very best friends just recently had this surgery.
    The wires came off her jaw this past week.  The biggest problem
    seems to have been having to drink her food for the last 5-6 weeks.

    I can understand that any surgical procedure is a frightening
    business.  You have a right to ask your doctor a lot of questions,
    and to choose a doctor that has done lots of this type of surgery.
    I think it's a good idea to ask for names of patients, and
    also ask to see before & after photos, if s/he has them.
    The surgery can change the appearance of your face, and you
    have a right to be concerned that a satisfactory job is done.

    My friend is not a DECcie (i.e. on the net), but I'm sure
    she'd be willing to talk to you about what she's gone through.
    Send mail if you'd like more information.
    
    I hope it all works out well for you.
    

    My husband Ray has had this surgery. The dentists said his jaw was
    making his teeth fit incorrectly.
    
    When I first saw him after the surgery I burst out crying. It looked
    like someone had beaten him up. Both his eyes where black and blue,as
    was most of his face. His lips were so swollen that they were spread
    open across his face. If I had not been there he would have died.
    This was a military hospital and one officer was in charge of a
    whole ward. Ray started to vomit and could not open his mouth or
    sit up by himself. Luckily I got him upright and the nurse was able
    to rinse his mouth. He had been given wirecutters for an emergency
    but we ended up not having to use them. 
    
    Ray could only eat from a straw for 8 weeks. His wires came off
    the day before Thanksgiving. Even though he was in considerable
    pain (your jaws sort of freeze into position and moving hurts) he
    ate Thanksgiving dinner. He nearly passed out but he wouldn't give
    up. 
    
    For years Ray had little or no feeling in his chin. He found shaving
    was tough since he sometimes couldn't tell he was cutting himself.
    Today (around ten years since the surgery) his chin has feeling
    again and there have been less problems with his teeth. Would he
    do it again? He's not sure if he would have done the surgery if
    he had known what it would be like.
    
    Get a second opinion. I suspect part of Ray's recovery pain was
    due to rather harsh treatment during surgery. When you talk about
    this sort of operation it is literaly having someone break your
    face. Some docters are gentler than others. Do speak to someone
    that had this particular docter, it makes a big difference who does
    the breaking and cutting. Liesl                                                            

    I've never had, nor t'my knowledge known anyone who's had, that
    sort of surgery, but I share your concern about the logical connection
    between the problem and the proposed treatment.  I strongly support
    Liesl's suggestion:  GET A SECOND...AND MAYBE THIRD!...OPINION.
    From Board-certified specialists, not just anyone with the right
    label on their shingle.
    
    						=maggie

    One of my closest friends is a dental hygienist in New Jersey. 
    He doctor specializes in TMJ.  When I told her about my daughter-
    in-law's problem with her jaw locking open, she recommended calling
    Tufts Dental School and ask them to recommend a specialist.
    
    Depending on the particular problem - the doctor in N.J. said that
    breaking the jaw and wiring it (for my daughter-in-law's problem)
    is "barbaric."  Please check into this very carefully.
    
    Trudy
    

    I have had 8 opinions.  The only thing I haven't done is talk to
    anyone who has actually *had* the surgery.  All weekend, all I did
    was think of the surgery, trying to imagine what I am going to feel
    like.  I am a single parent, my parents live a few blocks away from
    me and my best friend and mom said they would take turns taking
    care of my daughter.  We just don't know about the length of time
    I will not give a ***t about whats going on around me.  We have already
    decided that she will not be allowed to see me until I am not so
    frightening but will be allowed to talk to me on the phone.  I have
    requested that *noone* from work will come to the hospital until
    my mom gives the ok.  I don't know if blood will be required, but
    if it is I want to donate for myself.  I found out the Colorado
    hospitals do not allow this.
    Lisel: I used to work in a military hospital, and there is a night
    and day difference in patient care, so I can understand your husbands
    problems with the recovery period.  I had my nose broken while in
    the Army, and the hospital medics refused to apply the necessary
    ice to my face while I was totally out of it on morphine which resulted
    in severe swelling and discoloration.  Things that happen in military
    hospitals would *never* happen in civilian hospitals because you
    can't sue the military.
    
    vivian
    

    This is not the exact same surgery, but 9 years ago my daughter
    had reconstructive surgery on her mouth.  She had worn braces for
    almost 2 years when I was determined that they weren't working.
    Her mouth was too small for her teeth and tongue. after several
    opinions surgery was deceided to be the answer.  Her upper mandible
    or what ever its called, was broken in three places and wired, her
    tongue was split down the middle and 1/2 inch was removed from the
    center and 1/16 inch was removed from the tip. She was then wired
    suht for 10 weeks.  Before this operation she coulden't close her
    mouth. Oh| they also removed some teeth.  She lost some of her sense
    of taste for a couple of years, due to the surgery onthe tongue
    and her appearence was altered just a bit, not negitive, but she
    and I both agree that it was the right decision. 
    She had a rough 2 years after the operation, but after 14 years
    of not chewing, it was bite and swallow, she looks great and can
    chew anything she wants with problems. 
    I suggest you get to know the surgeon and get comfortable with him
    or her it reall helps.

    This morning, I talked to a very nice gentleman from back east who
    had had the surgery in Nov.  He gave me alot of info on the personal
    part of the surgery, how he felt, what they did, what he ate, etc.
    I feel better informed than I was and truely appreciate it.  For
    all the others who have responded to me by mail, I thank you.
    wish me luck, I'll let ya'll know when the surgery is and then I
    would appreciate some positive strong get well vibes on the day
    of the surgery.  Every little bit helps!!!!
    
    vivian

	I also have (or did have) TMJ.  My TMJ problem was *NOT*
	corrected by surgery.  

	Just to give you a little history, when I was 9 years old,
	I was involve in a car accident - went through the windshield.  
	Among other injuries, my jaw was broken and all my baby teeth 
	were knock out.   For the next 2 years, I was in and out of Mass. 
	General Hospital having "repairs" done on my eyes, face, jaw, etc.  
	After my jaw was set and my adult teeth grew in, I spent the 
	next 7 years in braces.  

	My dentist told me a long time ago that I have TMJ, but he felt if 
	wasn't causing me any pain leave it alone.   A years and half ago, 
	I was getting tremendous headaches every single day and various 
	facial pain.  My dentist sent me to an orthodontist in Nashua, N.H.
	
	My orthodontist, does not recommend surgery for TMJ, unless it's
	the last resort.  To make the long story short,  I wore a "splint" 
	on my lower teeth, for approx a year.  The purpose of the  
	"splint" is to realign my bite.  After wearing the "splint" for a 
	week my headaches and facial pains went away.  I am now being 
	"weaned" off the "splint and having  braces slowly put in.  
	I will be in braces for the next two years (heavy sigh).

	Vivian, please get a second opinion.  I'm located in Merrimack, 
	N.H. and my orthodontist is in Nashua.   He's *very* expensive, 
	but he is worth it.   If you or anyone else would like more 
	information concerning my orthodontist and/or treatment, please 
	feel free to send me mail or call.  

	Good luck, 

	Lory VanGilder
	{MANANA, TAMARA} XANADU::VANGILDER
	(dtn) 264-1897	

	

    I had a friend you had the same treatment as .11.  She used to have
    very severe headaches from her TMJ.  And the splint really worked.
    I also have a friend who had the surgery for it.  She has recovered
    very nicely, the only complaint she had was her liquid diet.  I
    would recommend getting a second opinion no matter what.  I consulted
    with my regular dentist for weeks, before having and oral surgeon
    remove my wisdom teeth.  I also made a major note of telling the
    surgeon and writing in big letters on my information card, that
    I bruised very very very easily.  I had hardly any swelling or
    brusing when it was over.
    
    Good Luck.
    
    p.s-  There is a TMJ specialist in UMASS medical.  If you waant
    I can find out her name for you?
    
    

    
    I have had quite a bit of dental/orthodontic/surgical work done
    on my mouth.  In 7th grade I had a Palatal Expander in my mouth
    which literally spread apart my upper palate to be better aligned
    with the lower one.  This probably contributed to my TMJ.  It
    took years for the doctors to figure out what was causing the
    horrible earaches I was having.  I was a lifeguard for many years
    and thus the TMJ was often assumed to be middle ear infections.
    I practically od'd on antibiotics!
    
    I went to many oral surgeons and dentists.  I had the same amount
    of differing opinions.  When I thought I was ready for the surgery,
    I couldn't find a second doctor to agree on what was going to be
    done (for insurance...second opinion requirement).  As it turns
    out, a chiropractor has been able to help relieve the ear pain
    somewhat.  I am currently wearing (occaisionally) a night guard
    as well.  I already had braces and several teeth out, but not for
    the TMJ.
    
    My problem is that the disk is out of place and through surgery
    could be put back in place.  The bones currently grind together
    in the joint causing the earaches.  But between the chiropractor
    (I can give you his name) and the night guard (not a splint), I
    am o'k.
    
    Your problem sounds like something is more structurally wrong. 
    As you can see, I have gone through many years and *many* doctors
    trying to figure out what to do.  It has been very frustrating and
    expensive, as you probably know. I can only suggest, as it appears 
    other people have, that you definitely get a second, third, even 
    fourth opinion, before you undergo this surgery.  Most of my doctors
    have told me to take aspirin when the pain gets bad, but if you
    really have a great deal of pain, I hope the surgery (or splint
    therapy), or *something* works for you.  I would like to keep in
    touch with you to see how everything goes.   Good luck in any case.
    
    Jennifer 223-1310
    
     

    well I had my presurgery appointment this morning, what a trip!
    They made some new molds, I thought my braces were going to come
    off with my teeth.  He is going to make the surgical splint this
    week, and then next thursday I get to go in and do more *stuff*
    to prepare for the surgery and then he will set the date.  He says
    early May.....
    I see a wonderful chiropracter who has been treating me for about
    6 weeks.  He has eliviated any pain medications I was previously
    being given.  He is going to come to the hospital to continue my
    chiropractic care while I am in there.  The treatment has actually
    given me feeling back in my face again and relieved the pain from
    when my braces are cranked.
    If you all are interested, I'll give a blow by blow account of this
    kind of surgery for future reference, since I have worked in a hospital
    before, the surgeon is going to give me a *full* explaination of
    what he is going to be doing.  
    for those who have suggested a second opinion, I have had 8.  This decision
    to have the surgery is after a long period of heavy duty pain.....
    
    One thing I have decided to do is have a Pre-surgery Pig-Out 2 days
    before the surgery.  About 15 people are going with me to this
    resturant to pig out till we have to be rolled out of there.  mmmmmmmm
    Just think of the memories I can live off of while my mouth is wired
    shut!
    
    well, here's to jello
    
    vivian

    
    	I would like to print something out the latest issue of 
    	Muscle and Fitness (yes I read it....8*)), without permission
    	of course 8*)....
    
    	Muscle and Fitness, June 1987
    
    		Athletes in many sports, including weightlifting and
    	football, have been fitted with MANDIBULAR ORTHOPEDIC REPOSITIONING
    	APPLIANCES (MORA). These devices are designed to alleviate the
    	problems of temporomandibular joint dysfunction (TJM), a
    	misalignment of the jaw, which is supposed to lead to muscle
    	tension in the head and neck.
    		The theory was that following correction of the
    	misalignment via the MORA, relief of the tension would lead
    	to better balance and neuromuscular efficiency by the athlete.
    	Some previous studies have shown that MORA's increase strength.
    		Researchers in Maryland felt that some of the studies
    	were lacking in certain aspects and conducted their own, involving
    	12 varsity football players and a control group.  They subjected
    	their results to statistical analysis, which showed that although
    	there were individual gains within the group using MORA's, the
    	increases were not statistically significant.  The researchers
    	could find no significant increases in muscular strength or
    	power in the MORA users.
    		One difference in this study was that it was conducted
    	after a 72-hour adaptation period for the users, rather than
    	immediately after application as in some earlier studies.  Thus,
    	there is now the scientific question associated with the use
    	of MORAs, which can cost from $300-$800 when fitted.
    	(The Physician and Sports Medicine).
    
    			Mike
    

    Well the date is set, June 2, at 8:00.  I am a nervous wreck!!!
    I have been told that I have to go on a massive weight gain this
    month, however, the damn orthodontist will be tightening my braces
    every monday for the next three  weeks.  I think the man is a sadist!
    Food??? I can't EAT!!!!!  
    Ok, ok, I'll calm down, my spring fever is still attacking, so I'll
    just go with that and quit worrying.  
    
    I am having a pre-surgery pig out on the 29th of May, if anyone
    out there will be in colorado, let me know.  Or even better, wherever
    you are, pig out that night, and send me mail and let me know what
    you ate...;-}
    I will be out of work for 4 weeks, but my manager has agreed to
    let take a terminal and modem home so's I can keep in contact and
    even do some work at home...
    
    so.....Here's to FOOD!
    
    vivian
    

    I've found the information many of you have given very informative.
    I'm interested because my daughter-in-law has been diagnosed as
    having TMJ.  Her problem is one that I have not seen discussed -
    her jaw locks open!  She can't yawn (at least not the way the rest
    of us do), it's a real problem when she goes to the dentist.  It's
    very painful - and can take hours before her jaw relaxes and unlocks.
    She has been wearing a retainer daily - her doctor is a periodontist
    who specializes in TMJ.
    
    Has anyone had this particular problem?  Any advise?
    

    	Well, after all the discussion on TMJ, I have to ask:
    
    		What is TMJ?
    
    	Scott (No, I did not just fall off the turnip truck)

    RE: .17
    
    Yup, I've had my jaw lock open twice -- it lasted for about a
    week each time.  It was open only a little bit (not so that
    anyone else would notice) and it was only on one side.  I'm
    lucky, I guess, that I'm usually able to yawn with no problems.
    However, I almost constantly have clicking in my jaws (sounds
    kinda like snapping twigs or, when it's really acting up, like
    I'm splitting pebbles with my molars...) and my head rings and
    buzzes constantly.
    
    Now that this is considered a physical problem, rather than a
    dental problem, does anyone know how Matthew Thornton (yuck)
    handles these cases?
    
    Susan

    Gee whiz, I've lived with this (minor) problem for about
    15 years now!  I just thought my jaw was weird!  It doesn't
    lock too often, and I can "manipulate" it back into place,
    so it really has been a minor inconvenience.  The "pops"
    and "clicks" that occur regularly are probably more annoying
    to those around me.  And I have to be careful not to kiss too
    passionately (I'm not kidding!), it's rather awkward to have
    your jaw lock up during a moment of passion!!
    
    

    It really isn't that uncommon as a minor irritation, and is
    often treated by braces and chirpracty among other things.
    The man we buy our paint from has been through all sorts of
    agony with TMJ and been to many different doctors before he
    could find relief. He was told at one point that many suffers
    end up in psychiatric care because since no one can solve their
    problem them begin to think it is "all in their head". I have
    minor TMJ - my jaw locks if I get too vigorous when doing my
    "anti double chin exercises" (:-}) and having my teeth cleaned
    is painful because I have trouble keeping my mouth open wide
    enough and it makes my jaw hurt and lock when the hygenist rests
    her hand on my lower jaw to do my upper teeth.
    
    Bonnie J

    I have had all the symptoms mentioned above at various times, but
    I don't have a serious case of TMJ.  About ten years ago, my dentist
    made a rubber "night guard" which fits over the bottom teeth and
    keeps me from gritting my teeth together while I slept.  Having
    that made and wearing it "retrained me" so that I stopped clenching
    my jaw while sleeping.  That took care of a lot of the TMJ -like
    symptoms, and is worthwhile checking out for minor cases.
    
    I no longer even need to wear the night guard.
    
    I was a music major, and my case was aggravated by singing a lot!
    Once I stopped teaching music and talking and singing all day my
    jaw was a lot more comfortable.

    RE: last note
    
    My dentist recommended a guard, but I've been putting it off
    because I don't understand how it could help.  I can see where
    it'd help keep the teeth from wearing down, but I don't see how
    it could prevent clenching (my number one problem, day and night).
    
    Can you explain how a guard could help a determined clencher from
    clenching, please?  Maybe it'll sway me into finally taking some
    action.  (These things are big bucks, and my dentist said there's
    no guarantee that it'll work for me.)
    
    Thanks,
    Susan

    I think I am becoming an authority on tmj :-}
    Some of the minor symptoms that have been relayed earilier on are
    the beginning symptoms.  TMJ can advance to the state of:
    numbness in the face, excruciating headaches, severe dizziness,
    dislocation of the jaw, wearing away of the joint itself.  Others
    I have talked to have reached this level along with me.  At first
    I thought I was mentally off, Nothing seemed to work to help get
    rid of the symptoms.  The numbness felt like I had been to the dentist
    and had novacaine shot all over a side of my face ( the numbness
    switches sides), my medical doctor didn't believe in tmj, and said
    that I must be imagining the numbness.  The first couple of dizzy
    spells scared me so badly and when my medical doctor again recommended
    therapy, I started to believe him.  Then on a visit to my dentist,
    he suggested that I talk to a TMJ specialist.  When they did the
    nifty jaw xrays, it was discovered that the problem was in fact
    tmj.  The joints have deteriated to the point where I have mostly
    mush for jaw joints.  The braces were the first step, the surgery
    to move my jaw forward my 8 mils is the next, this is to improve
    the bite of my teeth, to remove some of the muscle strain in the
    jaw area.  If this doesn't get rid of the symtoms, the next step
    it to replace the joints themselves.  
    I remember the days of the minor symptoms, they were so easy to
    disregard.  I only wish that I had started treatment earlier with
    the plastic mouthpiece, maybe it would have prevented some of what
    I am going through now.  The elevation and increase of the pain
    was caused by two car accidents. What has happened to me is happening
    to more and more people.  It is now a recognized condition.  I find
    myself bursting out in tears alot, mostly from frustration, I am
    truely tired of pain and misunderstanding of people around me as
    to why I am such a bitch when my braces are tightened, or when I
    have a headache, or when my facial muscles spasm, causing alot of
    pain and grimaces.  people who don't have the problem are very quick
    to offer advice that doesn't help.  I have sat my manager down and
    explained what was going on with me cause he didn't understand why
    I was so *moody*.  The guys I work with think I'm nuts. My surgeon
    is having me come back to work in four weeks after surgery, which
    means I have to dodge wellmeaning comments and teasing from my
    co-workers cause I won't be able to talk on the phones, or eat.
    Just thinking about not being able to eat is traumatic.  I love
    food. One thing I did find out though, was if you have read that we now have
    $1000 a year tmj benifits, understand that you Must have John Hancock
    insurance.
    I have talked to many people via mail and phone calls and they could
    definitely add to the list of things so far known about tmj.  The
    best recommended advice is to SEE a TMJ specialist, not just a medical
    doctor, chiroprator, therapist, or dentist.  
    well, babbeling time is over,,,,, 

    Three weeks and counting,.........
    
    vivian
    

    re .24 --> how a night guard works
    
    It is made of medium hard rubber/plastic.  
    
    When wearing it, I found I was unable to clench my jaw tight
    and get a good "grip", for lack of a better word.  It would be like
    trying to push on a mattress with your hand.  Eventually it would
    get tiring and it would just be easier not to push.  That is what
    the night guard trained me to do.  It made it hard to clench my
    teeth.   I did not have to pay any conscious attention to it, it
    just happened over a period of about 6 months.  My dentist thought
    that I might have been clenching my jaw and grinding my teeth for
    years.  Once I "unlearned" that response, I didn't go back to it.
    
    I reached the point where I no longer had to wear the night guard.
    I still have it somewhere, and would begin using it again in a minute
    if I started having jaw pain.  Jaw pain (even at the relatively
    minor level I had) is very distracting, and it is hard not to
    constantly obsess about it when it is happening.
    
    If I had to do it again, I would definitely try a night guard before
    undertaking any more drastic measures!
    
    Good luck.
    
    Holly
    
    And good luck to you Vivian...I hope for you this is the answer
    to all the pain you have had.
                                                                    
    

    Thanks, Holly -- I guess I'd better look into getting a guard
    again.  Wish I hadn't waited until this time, since I'm 
    apparently not covered for any of the expense now.   Hmmm,
    yet another reason for dropping Matthew Thornton....

	My father was experiancing terrible headaches, and the Dr.'s
	decided it was TMJ.  He had surgery, and now has to wear
	a spacer in the back of his mouth for the rest of his life.
	The headaches didn't disappear.  He's now talking to a brain
	Dr. (I'm bad at remembering correct terminology).  This Dr.
	said that there's a part of your brain that they know very
	little about because it is enclosed in bone, and even in autopsies
	they rarely crack the bone to get to it.  They think that it sometimes
	gets inflamed and builds up pressure.  He has my father taking
	medicine to reduce the pressure.  My father says that he thinks
	it might be working.

	I guess my point is that medicine is really a lot of guesswork,
	and a lot of people get treated for whatever the popular
	disease/problem is at the moment.  Another reason for getting
	lots of opinions.

	...Karen

    
    
    Vivian,
    
    Sorry to hear that you are going through all this physical stuff.
    Hang in there!
    
    Carole
    

    With all this talk about TMJ and symptoms, no one has mentioned
    having an itchy head.  My mother has been diagnosed as having TMJ
    and she has the painful headaches but her head is also very very
    itchy.  The itchiness starts at the top of her head, goes down over
    her ears, under her jaw and down to her chin.  There is nothing
    the doctors can do for the itchiness, yet as everyone knows there
    are ways to aliviate the headaches.  
    By reading all of the other notes and the frustrations of endless
    pain and doctors not knowing what is wrong I can understand.  My
    mother is going NUTS!!  This started a year ago, and was diagnosed
    as a pinched nerve.  She was in traction until December and when
    it wasn't helping they decided it was something else.  The headaches
    don't bother her as much any more, but the itching drives her crazy!
    She has scratched her scalp and ears raw on occassion.
    
    I am just curious if any other TMJ patients have experienced the
    itching?
    
    Curious,
    Renee

    Hi all, I am finally back.  It has surely been the most instructive
    time I have ever had.  I have finally got a hellasious war story
    to tell.  I had my jaw wired shut for 7.5 weeks and I didn't miss
    food as much as I thought I would.  I missed being able to communicate.
    I did on occasion, out of pure frustration throw a few sundry things
    around...  My daughter became quite good as my interpreter.  I lost
    15 lbs, and quit smoking.  I haven't had a reoccurance of the tmj
    symptoms but then, I haven't been able to open my mouth either;-}
    so once I get to doing things like eating real food, talking again
    on a regular basis, who knows??
    I want to thank all the positive energy people out there, I really
    felt the strength when I needed it the most.  I think the greatest
    thrill was waking up after the surgery and finding out I hadn't
    died like my Peak Health doctor said I would(he was a jerk, I am
    talking to my lawyer now...) Well, it's back to work now, I have
    a tad bit to do.. but I shall return to read all the new stuff I
    haven't read yet...
    
    vivian
    

    
    Welcome back, Vivian.
    
    Lots of water beneath the bridge since you were last here....
    
    DFW

    Welcome back !  And Bon Appetit !