TMJ Reality


Hi…My name is TMJ and I have come to take
over your life. I don’t need your permission…
I don’t even care if you want or like me. I have
invaded your face and your life and there is
Nothing you can do about it.

I remind you of your doctor’s don’t I? I’m a
heartless, uncaring, unfeeling being that you’ll
have to live with. Don’t try to get rid of me
because the harder you try the more I’m going to
cause you pain. I’ll make you think and do things
that you normally would not do.

I’m here to tell you that you’ll never be the same.

I don’t like when you try to eat, smile, kiss, talk,
or act like I’m not here. I enjoy when I keep you from
doing the things you love to do. In fact, it makes my day!

That beautiful young perfectly formed face you once had
…it’s mine now and you’ll never get it back. I’m the type
that is quiet but well felt. That’s why your family, friends,
and doctor’s think you’re crazy.

It makes my day to see you take all those pain killers,
to try and camouflage me. They just give me the incentive
to hurt you more. I laugh at you when people call you a
“drug addict”

Let’s face it…you’re fighting a losing battle. Why don’t
you just give in and admit that I have won? That would make
my purpose a lot easier to accomplish. Get use to me because
you’re stuck with me and I am stuck with you.

Those dreams you once had, are just long ago memories.
They’ll never come true. I’m your worst enemy living
in your face. The best part is I affect not only your face,
but the rest of your body and mind as well. I strive very
hard, to see how bad I can make you hurt and how loud
I can make you scream. The more you deny me,
The worse I’ll get. I’m your worst nightmare come true.

Love Always,
TMJ
Written by Maria Holleman (TMJ Sufferer)


[This message has been edited by Elaine (edited 09-09-2001).]

Hi Elaine...Did you write that? Very good. It sure fits my frame of mind lately. Beaten down but not quite out. We will eventually succeed in driving the demon out. We can't give up. I no longer care if people call me crazy or an addict. I do what I have to do to keep myself and my family going the best I can. Keep on keeping on! : )

TMJ…What IT HAS DONE TO US…

TMJ has totally consumed our lives.
It controls everything that we do.
What you as a “normal” take for granted,
We as TMJ sufferers can not.
We are a people all our own.


Most of us haven’t eaten solid food in
so long , we aren’t sure we remember how to chew.
When you smile…you feel good.
When we smile…we feel pain.
One of your bad headaches
Is one of our good headaches.
Most of us have had to give up our jobs.
Most of us have had to give up our “normal” lives.


We have been reduced to sucking through straws
and depending on medications to get us through the day.
The days that the medication doesn’t help…
Are the days we call HELL. We guess by now you’re wondering
how and why we ended up this way.


We give THANKS to the doctors that took our pain
and suffering and used it to better himself/herself.
All they seen were dollar signs. These doctors never told us
“ALL”
the risks involved in having TMJ surgery.
They never told us that we would never be “normal” again.


They never told us that the surgery they did would
make us worse. They never told us that the parts
they were going to put in our bodies (whether the parts be man made
or from our own bodies) would one day fail. They never told us when
these parts failed, they would never treat us again.


They never told us the reason these parts failed was
because of them. They let us believe they failed because of us.
They never told us that our faces would change shape. They
never told us our bite would change. They never told us they would
turn their backs on us and deny ever scarring our lives forever.


We the TMJ family would like to THANK YOU our dear
Doctors for changing our life forever. We’d like to ask you
our dear doctors…”How can you sleep at night knowing how
many lives you have ruined?” “ How can you eat knowing we
will never be able to eat the way you do?” “How can you smile
knowing we will never really feel the pleasure of smiling the way
you do?” “How can you face yourself in the mirror knowing it was
YOU that did all this to us “Well our dear doctor…How can you?”


Tell us dear doctor…Have you ever wondered what it’s like
it’s like to be screaming and crying in pain…
and hear your children in the background crying
and asking their daddy what’s wrong with mommy?


Tell us dear doctor…Have you ever wondered what it’s like to see
your spouse cry because they don’t know how to help you? Picture
this dear doctor…picture a grown man, a daddy and a husband crying
so hard he can’t talk because your in so much pain he can’t help you.


Tell us dear doctor…Have you ever wondered what it’s like to crave
a McDonald’s hamburger and know you’ll never be able to eat it
because you can’t open your mouth to chew it?


ANSWER US DEAR DOCTOR…WE’D REALLY LIKE TO KNOW.

Written by Maria Holleman



[This message has been edited by Elaine (edited 09-09-2001).]

Carole,
I didn't write those poems but they describe the medical nightmare to a T. They were written by Maria Holleman. I am not sure what is going on with her, last I heard she was seriously ill and having another surgery. These were on her web site and her site is down. I copied these over a year ago and just ran across them again.
No one knows this hell until they live it, it is definitely not a stress disorder,
although it causes stress, when you're in so much pain you puke!!!
Take care,
Elaine

[This message has been edited by Elaine (edited 01-16-2002).]

Elaine,

The poems you posted REALLY hit the nail on the head!! I've read your story on the website you posted and.....I don't know what to say. We've all hit "rock bottom" numerous times, yet somehow, we manage to go on. I know it's been said many times before, but you have to keep searching for even one small thing that could lead to relief - even if it's only a little bit of relief. You seem like a strong person to me, and I think if anybody can persevere, YOU can. I've experienced your pain, perhaps not to the degree that you have, but I know where you're coming from. Hang in there, and know that someday, the light at the end of the tunnel will NOT be an oncoming locomotive! Be well.

[This message has been edited by Marlene (edited 03-01-2001).]

[This message has been edited by Marlene (edited 03-01-2001).]

Marlene,
I am trying to be strong but this is a real test. The car wreck that caused my tmjd also left me with back problems. In October I had a back fusion and it was the surgery from hell. I am doing better, still have a long ways to go. I started Physical Therapy today, they said my whole body is basically in spasm. I have wore a body brace for the last five months, every since surgery so I think my muscles got lazy. I am trying to wean myself out of the brace, what a chore. I went in there for back therapy, they spent the whole time working on my jaw and neck. TMJ and back problems are definitely connected. The good thing is I was out walking within 10 days after surgery and that has helped. I know as bad as I feel, there are others that feel a lot worse than I do!!! Have to keep positive...
Take care,
Elaine

Oh gosh, that really makes me cry.

Elaine, do you know anything about the success of harvesting fat and dermis for grafts in open joint surgery?

I don't really know much about the dermis grafts or the muscle flaps. My doctor recommended a muscle flap "next" but I think I am bowing out of this TMJ surgery. Once I get this faulty implant removed, I am just going to deal with the pain. It seems to make no difference if you have something in the joint or not. I think mine is all muscle spasms. From what I hear, I think that is what the majority of TMJ problems are. Have you had surgery?
Elaine

I had surgery on April 6. A total joint reconstruction including condylar head surgery, menisectomy, harvesting of dermis and fat graft, repostioning etc.

I feel an odd lump in front of my ear and I have this weird feeling the graft is out of place. I'm still in as much damn pain and they keep saying it's surgical.

Nittygritty,
It may still be surgical pain since you only had surgery on April 6th. The bad thing about TMJ surgery, once you have one, you ususally need more. I don't know if the OS recommended therapy but you really have to keep working on your opening or scar tissue will develop and close you down. My second surgery was for scar tissue. I was down to 10mm. My third surgery they put in the Christensen fossa and three 1/2 years later the screws have come loose and I am looking at a 4th surgery to have it removed. I don't know what the answer is and I don't think the oral surgeons do either. We are experiments. Sad but true...
Don't give up yet, the graft may work but be careful with scar tissue.
Elaine

You all make the surgery sound awful. I don't know what else to do. I have spent over $5,000 in treatment and drugs and it has been over 3 years. I have tried massage therapy, moist heat, plates, etc. And this week I can't even open my mouth. My doc. is sending me in for a MRI on Friday and then I will talk with a surgeon. I don't want an implant but my doc was talking about flushing the joint???? I understand the pain that you are all going through. I have been at work on my floor in tears because of the pain. It has sent me puking to the bathroom on numerous occassions.

Flushing fo your jaw joint. Good luck. I've just had my right jaw joint "flushed" and was told by the Dr that I am the first one in his 20years of experience that he did not have success with. Post "flushing" experience to look forward too was that everyone thought that I'd had a stroke. My right eye wouldn't close for 4 hours, Dribbling from the right side of my mouth (some would say thats normal for me) and a whole new definition of pain. for two weeks afterwards. good luck

Nittygritty,

what surgeon performed your ops? I'm curious as I am from Melbourne also. I am in search for any info from those who have had their tmj disc removed, or surgery for that matter, as I'm heading in that direction.

Carey & Kimberly
Just noticed your posts. Did either of you have surgery or what did you find out???
Elaine

Wow this is intense! But True! I have to say that I am very lucky....over 5 years ago my jaw locked shut...all the surgeons wanted to do surgery...no medial doctor would touch me...but then I was directed to the Gelb pain clinic in Boston were I received the most wonderful/understanding treatment. I learned about foods that cause muscle tension, pressure point therapy, relaxation techniques and more. They explained that my jaw will never open more than a 3 finger width and that going to the dentist will be HELL. They were right. They scared me at first but now I know they wee telling the truth. Everything they have said has come true...mind you really nothing good.

I to, elaine was injured in an MVA 3 years ago, which has sparked a whole new meaning to word TMJD...I to have back problems..my jaw is out of line, my neck is out of line, by back is out of line, bone spurs growing, one leg longer than the other ect.... and no one doctor will dare touch the entire picture. They want to work on my neck and back and they "hope" to get some TMJ relief. Tmj doc's say this is the best it can be. so round and round and round we go.....
I would like to say that I feel a great relief knowing that I am not crazy, this is a disease and there are people just like me in this world suffering through the daily grind...And I would like to thank the creator of this message board and all who share their pain, experiences , their pain and their relief.

I am determined to see the sun again!

MissiM,
You are lucky to have a three finger width opening. I am less than two finger widths right now, 13mm. Scar tissue has built up from all the surgeries and is closing me down again. They say hind sight is 20/20, had I known then what I know how, I wouldn't be in this mess. Surgery is definitely not the answer for TMJD. If you can eat, open and shut your mouth, live with the pain as surgery is no cure.
Sorry to hear you have back problems also but I think they tend to run with TMJD no matter what the case may be. In our case, MVA and that adds insult to injury!
Soft tissue injury and all that good garbage.
Hope you get better, I am trying!!!
Take care,
Elaine

Hi Elaine,

I have been learning alot from your story and I thank you for opening my eyes up to the surgery issue. I have neck/back problems maybe tmj, at night guard stage and still grinding. I have migranes too and it just all seems to be related. I really feel for you in this pain and thankyou for educating me, you are inspiring!

Mel33,
Try going without the nightguard and see if the pain is less or more in the morning. I had several different ones, convinced the next one would be the one that was made right. I finally quit wearing them and my pain didn't go away but it was better than waking up with headaches so bad that I literally threw up. With me I was a clencher and a grinder and those splints just made me clench more. A dentist will tell you your teeth are wearing down, don't they think they are still wearing down with the splints??? You still grind. Took me a long time and experience to figure out they are a money maker for the dentists and they will sell you as long as you will buy.
Hope you get better, this TMJD disease is the worst thing I have encountered, even worse than my back fusion and that is BAD!!!!

Good luck,
Elaine

Hi Elaine,

This tmj is so damn complicated! Without night guard was ok for a week or two now having jaw/ear pain. I hope it is migrane/neck related -have a disc bulge (whiplash injury) causing weird neck posture/ nerve pain and back problems. It is so hard to connect all these factors and I'm sure you must get extremely frustrated with your neck/ back/ tmj cause it sure sounds alot worse than mine! I will keep trying different things based on your advice. It is hard to eat anything crunchy and I hate this!,guess I should try and restrict my chewing. Hope your doing ok.
Mel

Mel,
Ear, neck, jaw, shoulder pain are all part of TMJD. I have resigned myself to eating soft foods, if I don't I suffer. I don't even bother with steak anymore, haven't had one is so long, I can't remember.
One thing I found that does help with pain. Sew a dishtowel with a pound of regular rice in it. Heat it up in the microwave for a few minutes and it gives off a moist heat that really relaxes the muscles. It does wonders!!!!
Take care,
Elaine

TMJ REALITY is what I live EVERYDAY of my life because I fell into the promise that surgery would make me better. Once you have surgery, you are going to have more pain and misery than you bargained for. If you are not locked open or shut, don't even think about it.
Not trying to dictate to anyone but is a word of fair warning. I didn't have anybody's mistakes to learn from, you have the option of learning from mine.
Take care,
Elaine

Elaine,
I haven't had surgery yet but it is getting to the stage where I think I will have to. I am past the 4 month mark of being locked shut with an opening of 1 centimetre after an arthrocentesis made my tmj worse. I am seeing another oral surgeon (my 5th so far)who is interstate, so i will be flying out to see him on Tuesday. I am doing as much homework as i possibly can on tmj espescially SURGERY.
I am so aprehensive about it (surgery) but i dont have much of choice.Things are not getting any better, but worse. I am on a liquid diet and have been for the last 4 months, my migranes are worsening, as is every other symptom that attaches itself to tmj. i am on valium daily for the muscle spasms and painkillers that only dull the pain a bit. i am so sedated from the medication that my functioning from day to day is deteriorting greatly.

I am aware that surgery may not fix my problem totally, but at this stage any relief would be an absolute God send.

The plan for surgery is to remove my left tmj disc totally with NO IMPLANTS. i will not waste my time in having the disc reatached because like you know it almost guarantees you a candidate for further surgeries because of tearing.
I am aware of the chances of scar tissue, but i am willing to take that chance i am in agony and cannot stand to go on living with an opening of not even one finger width for the rest of my life!!

I am only 21 years old and know that tmj will probably haunt me for many years to come, but something has to be done.

Thanks Elaine for your continuous informtion and advice, I will keep you posted.

Take care,
Carey



[This message has been edited by moderator1 (edited 08-06-2002).]

Carey,
If you are in a closed lock, surgery may be necessary. All I know is that it should never be done for internal derangement,( a displaced disc) that is what I had. I saw my oral surgeon that implanted me with the Christensen fossa and he agreed with the doctor in Chicago that it needs to be removed. It is really irritating my jaw joint to the point I can't even touch my face. He didn't suggest replacing it with anything which surprised me as a year ago, he wanted to do a muscle flap. He said the headaches, ear, neck and jaw pain will probably never go away. I just don't understand what the purpose of all these surgeries was. I am right back where I started from with puking headaches, the original reason for having surgery. Meanwhile I am fighting with my insurance company for something that is not considered TMJ but medically necessary and they can't see through the haze. I am so disgusted with all these jerky insurance companies. I don't wish bad on anyone but I wish they could have a taste of this TMJ hell!!!
Take care,
Elaine

[This message has been edited by Elaine (edited 01-16-2002).]

Elaine,

although i am in a closed lock, it is caused by my internal derangement. My disc is anteriorly displaced and wont budge. I cannot physically open it more than one centimetre.

Thanks for your comments,

Carey



[This message has been edited by moderator1 (edited 08-06-2002).]

Carey,
My disc was displaced but not locked. I can't imagine being in a locked open or shut postition. I have enough probems eating with a 13mm opening, can't imagine what you must be dealing with. Hope things work out for you.
Elaine

Elaine,
You said that you had surgery for internal derangement. If you weren't locked shut, what was the purpose of surgery to remove the disc? I'm curious to know. Was it to releive the pain of headaches, earaches, facial pain and the rest that accompanies tmj?
From posts on other tmj boards, noone seems to understand why my jaw is locked from a displaced disc. I think it is quite simple to understand. my disc is in the wrong position, therefore since it is in the wrong place and wont budge, it is impossible for me to open past the point of where the disc is displaced. Does anyone understand what i mean???

Take care,
Carey

Carey,
The initial surgery was to put the disc back in place. I was having such puking headaches and the OS thought it was from the displaced disc. All I had at the time was the popping and clicking upon opening and of course pain. The disc was put back in place, two years later I had such scar tissue buildup a second surgery was required so I could open to 25mm again. I guess somewhere around 40mm or more is normal. I have never been that far since having the first surgery. The third surgery my joint had started to fuse together and that is when they put in the implant. He said I had the jaw of a 90 year old woman with so much scar tissue and osteo-arthritis that he didn't know how I had functioned. Needless to say, I didn't function, I suffered everyday and still do. Now the screws in the implant are loose and I am told to get the implant out and replace with nothing. I am back at square one, same pain, same puking headaches, I don't understand the purpose of the surgery to begin with and funny thing, the doctor couldn't give me a reason either. His comment was I had relief for a few years and now I learn to live with the pain. $100,000 later and to be where I began is a little much to take.
Your case is a little different in that you are in a lock, that is totally different than my situation and I don't know how to advise you. All I know is that surgery should have never been done in my case but I am hoping someone can learn from my mistakes.
I wish you well in whatever you decide and I may be able to connect you with others that know more than I do about TMJ surgery. I know enough that it makes me sick but like I said, in your case it is somewhat different than mine and you may require surgery, I didn't!!!!
Take care and I will try to help you anyway I can.
Elaine

Hi Elaine,
Wondering how your doing and if anything can be done to get rid of the scar tissue and treat the osteoarthritis. I know you have been to hell and back with all this but there must be something out there somewhere. I have benefitted alot from your advice and my jaw has settled a bit on it's own contrary to what the dentist thought even though I do get those headaches. Have you tried other forms of pain releif like accupunture? just curious, take care.
Mel

Mel,
There is nothing that can be done for the scar tissue and osteo-arthritis. Once you have surgery on a joint you "usually" will always have both to deal with. I will just have to have clean outs when it gets to the point that the scar tissue closes me down again. Nothing ever changed painwise with all this surgery, that is what is the pits. I still have the same headaches and etc. I did try acupuncture but my back is such a mess that it didn't seem to help me. I think if TMJD would have been the only problem it may have helped. I had back fusion in October and still have a herniated T12 that the doctor refuses to operate on as he says it could paralyze me. I am only 49 years old, I push myself everyday to keep going. Some days it is so tough but I refuse to let it get the best of me. My mess was caused by a whiplash accident too, hit broadside by someone going 70mph, guess I am lucky to be alive.
Take care,
Elaine

Just a update on me. I have had two opinions concerning the Christensen implant and what is amazing is my implanting oral surgeon agrees the implant needs to be removed. He says it has served its purpose but I have yet to figure out what the purpose was. I am having the same puking headaches, the same head, ear, and jaw pain that I had before I ever had the first surgery. To remove it will be surgery number four. I will still have to deal with scar tissue and have clean outs and he stated the headaches will "probably" never go away. All this money and I am right back where I started, you tell me, what was the purpose???
Very Frustrated!!!
Elaine

Hi Elaine.

I'm fairly new to this board, and honestly before I started reading this, I was considering surgery. Now I'm not. Thanks for the warnings and advise. Right now I am waking up locked shut each morning, with a one finger opening, but I have a method of unlocking and can get by for now. Hopefully I will find a treatment that works before I lock up permanently. I'm currently on my third splint and running out of options, but all of my splints have covered all teeth, so I'm going to try one that keeps my back teeth apart and see if that works. I think I'll try seeing a chiropractor again. There's a technique called myofacial active release that is supposed to remove the adhesions in muscles (something that has been done with adhesion surgery in the past). I've spoken to a few chiro's who want to treat me very aggressively (every day for a few weeks) which is going to be costly and painful (active release HURTS) but I'm running out of choices so HERE I GO!!!!

Keep on pushing on. I can't stop trying. Never. I'd go mad if I were living with this pain and not doing anything about it. As long as I'm in some sort of treatment plant, I feel like I'm working on this problem and that one day I'll get some releif. Some people think that it's a cruel thing to convince yourself that one day you'll be ok, because we all know that with TMJD, you'll never really be ok. But even a tiny bit BETTER would be enough to make me feel like it's worth it.

Thanks for convincing me not to pursue surgery until I'm at a point where I have no choice. Hopefully I can find something that works before I get to that point. Or at least stabilize. I can unlock my jaw every morning for the rest of my life if I have to, as long as I don't get any worse. I guess that's really my goal here, because I know I'm getting worse. Stabilizing this thing would be enough for me right now.

Gotta just keep on keeping on.
Good luck with your fourth surgery.
Melanie http://www.healthboards.com/ubb/dance.gif

Melanie,
I just saw your post here today! I am glad you have decided to check out different options before having surgery. I don't know much about locking as that has never happened to me. The only locking I have is when my implant hangs up and I have to get it to release or the pain drives me up the wall!!! The thing people need to realize, with one surgery that will not be the end of it. You then have to deal with scar tissue and cleanouts and etc. My bite has never been the same, my mouth deviates to the right on opening and I chew the same way.(With what little I can chew) Heck of a diet!
I question the success stories when even the FDA is putting the responsibility of the implant issue on the oral surgeons, they no longer want to be held responsible. This should tell us something!!!
Take care and keep searching for the "real" answers!!
So far I haven't found them either.
Elaine

Elaine,
You have been through hell and I have been through a lot of the same things as you. I too, had surgery for internal derangement. What a mistake!!! I have the Christensen fossa implant and having the same problem, loose screws. I think the FDA is on to something, why else would they put the responsibility of the implant issues on the oral surgeon? They sure don't want to take the blame when people are screwed up for life. I know of so many with different types of surgery and implants, some have died. This should tell us something.
This board has some interesting posts and good information.


[This message has been edited by moderator1 (edited 08-06-2002).]

Bumping this back to the top for "tenderhearted"
Elaine




[This message has been edited by Elaine (edited 01-14-2002).]

Nicole,
If you get this far, you pretty much know all there is to know about my surgeries. The bad thing is there is no pain relief, if anything I am worse off!!!!!
Beware of the men in the little white coats!!!!
Elaine

More information for TMJ Reality!!!!!!

Symptoms of TMJ include pain and dysfunction that can radiate throughout the entire body, multiple headaches, and pain in the face, sinuses, ears, eyes, teeth, neck muscles, back, and leg cramps. Clicking and grating in the jaw joints, inability to open or close the mouth freely, and difficulty in chewing and swallowing are also often evident. All of these pain and dysfunction symptoms can be temporary or chronic (continuing for longer than six months) or intractable (never-ending).

This vast variety of symptoms makes a correct TMJ diagnosis difficult. Additionally, most TMJ symptoms mimic and overlap many other disorders, such as Myofascial Pain, Fibromyalgia, and Chronic Fatigue Syndrome. Compound this with the lack of universally accepted scientific research, and TMJ has acquired the name of "The Great Impostor," and has been described in the press as "A Medical Mess."

Although all surgeries have risks, TMJ surgeries are especially risky have proven mostly unwarranted or unsatisfactory. An initial surgery can often lead to more. Except in life-threatening emergency situations, it is strongly recommended that TMJ surgeries be avoided or conducted only after multiple independent opinions. A dditionally, certain jaw joint implants have been reported by the Food & Drug Administration to cause serious long-term medical problems, and rules have been tightened on their usage/approval.

There is currently no universally recognized medical discipline or accredited medical specialty that addresses TMJ. Jaw joints, due to their location in the oral cavity, are the only joints in the body that are considered both medical and dental joints. They are commonly and mistakenly isolated from whole body health and "assigned" to the realm of dentistry. Temporomandibular joints must be perceived as part of the whole body system and treated as are all other joints in the body. It is urgent that the medical profession take an active role in the diagnosis and treatment of TMJ. A change in perception would have several important consequences:

Current treatments often focus narrowly on the jaw and neglect other physiological systems in need of care. The desired therapeutic outcome is often not achieved, and many patients are left in serious pain or with serious dysfunction.

Elaine,
I have read this dozens and dozens of times. It really hits home. My feelings exactly.
Sharri

Hi Elaine,
I made several copies of your TMJ REALITY
posting and passed them out to my family
and friends. Nobody truly understands
this tmj pain even though they say they
do. I have read your previous messages
and can see you have been through a
living hell!!!! I know how this tmj has
affected my face, neck and back but to have additional back pain (surgery) would
send me into orbit. Isnt it enough we
have to deal with the physical & emotional
pain, but are looking at going bankrupt
too. GOD HELP US!!
Sincerely,
Carolyn

Sharri,
I keep reading this too. I have even sent copies to my OS. I think that may be why he is "not" very happy to see me anymore. Really, I don't think he ever was.
Elaine

I should send one ot the jerk that ruined my life too. oops, do I sound angry, Iam!
Sharri

I suggest printing these poems out and posting at all the oral surgeons offices that have screwed people up. I think we would be out of ink before we finished. Not to mention, they wouldn't stay on the wall long!!!
Sad, but true....

Has been a long time since I posted on this board. Things have gotten worse for me and I am very discouraged. Like, Elaine I also have the Christensen that has totally destroyed my condyle. I have a choice, total joint replacement or go jointless. To me this is not much of a choice. After reading the posts of others with these implants, I agree we are nothing but experiments that are doomed to fail with time.
I have read TMJ reality so many times, in my heart I know it is true. There is nothing that can be done for someone who has went the surgery route except suffer.
God bless everyone with this horrible nightmare that has been allowed to happen to us.
Kerri

Kerri,
I am as discouraged as you. Some days I would like to be used as target practice. The way I feel, maybe I already have been!!!!
I am still going to a pain clinic. I have come to the conclusion that I am never going to be pain-free and I might as well face it. The bad thing is now I am back to the popping even with the implant. I hear bone breaking when I try to open wide, the implant hangs up and sends me to the ceiling. What I wouldn't give to have insurance to get rid of this rotten thing. Of course the doctor who put it in wants his money up front, he could care less about the hell I am going through...More TMJ REALITY!!!
Take care,
Elaine

Hi Elaine,

From reading your post , you say that you can hear your bone breaking and your implant hanging. surely this must be considered as a some what urgent case? can you go to your local emergency room and get admitted to have something done about it? i dont have any idea of what kind of insurance policies you have in your country, but can you go on a waiting list to have your implants removed, if that is what you wish to have done?

I really feel for you Elaine,

Take care,
Carey

Carey,
Insurance will not cover me even under medical. I appealed their denial and they denied me the second time. They are sticking with the $3000 maximum for TMJD that is stated in the benefit book under dental. My "great" OS even tried to push it through as medically neccessary which it is but that didn't do any good either. If I thought I could get different insurance I would go that route but nobody will cover you "these days" if you have pre-existing conditions.
The sickening part is the doctors who help us get into this mess, will not help to get us back out...All they can say is pay first and in order to do that I will have to win the lottery. Now that my condyle is shot, the next step will be total joint replacement and on and on it goes. I can't afford me or the doctors either one!!!!
Take care and hang in there,
Elaine

Oh My god I had no idea of how many people are suffering the same way I am. The poem about TMJ, how it takes over your life....I am crying now. I hurt so bad, I am so tired of it. I just had BOTOX...they said it would help! It did not help as my forehead never hurt in the first place. They may try to BOTOX my muscles about my jaw joint (where we clench). I could only open one finger width before surgery in 1988. Now I can barely do 2 and 3 is a stretch. MY INSURANCE will not recognize this anymore. My MRI shows nothing that resembles TMJ on either side now.
Thanks for listening. Thanks for sharing. LOVED the poem
Shelley

Shelley,
I saw a medical program on TV about Botox injections. They said it is a poison but used in small amounts it is harmless. Also people do the injections to get rid of wrinkles. Like cortisone, it is a temporary pain reliever "IF" it works at all.
I hate to hear about your opening, that is what happens to "most" that have this surgery. One leads to another and it is a mess. My insurance company won't cover me anymore either. Hate to wish TMJD on anybody but I wish my insurance company had just a small taste of it.
How many surgeries have you had and what does the doctor say about your limited opening?
Take care,
Elaine

Shelly,
I have been getting BOTOX since 1997. I get the injections every 3 months. I would not make it without them. Elaine is right they are not a long term fix. The botox takes up to 3 weeks to work and at the end of the 3 weeks that is all the affects you will get. My doctor had a doctor flown in from another state. I do know that others have tried this and it has not worked, but I am a chronic grinder at night and it has helped me greatly. I get the injections in my temporalis, massetter, mostly and 2 or 3 other muscles around the TMJ area. lisalee

Shelley & Lisa,
I didn't do the botox injections but tried the cortisone ones. They were so damn painful, it was the first time I actually broke down and cried in a doctors office. The two numbing shots he gave me before the actual cortisone didn't do a thing. I swear it felt like a hot nail, twisting, and such pressure in the joint. I don't know how botox injections feel but personally I refuse to have anymore of either. I was told that over two or three shots of cortisone can actually rot the tissue so that was enough for me.(Of course I was told this was after I already had it done) For something that is short term relief, just not worth it!!!
Take care,
Elaine

Elaine,
Love the poems, where did you ever find them?
I am new to this board and your posts are very informative. I too had surgery, help!!!
BJ

I have just sat down and read this, I cryed and I try to stop myself from crying because afterwards the pain is so bad, but I could not stop. If people realized what we dealt with. We are stronger people fro our affliction, we realize just how precious certain things are that people take for granted everyday. In a way we are doomed but also blessed. People just don't know what it is like & I hope thay never do. Most people I know call me a hypchodriac *(i think thats close*) beause of the daily pain. All the while they are saying this I am standing there hoping they never have to experience it.
Thank you whoever wrote that: Thats should be our fight song

------------------
Crystal

Crystal,
I am with you, if people only knew how we suffer.
BJ

Elaine,
Are you still posting on this board? I read in a previous post that you are not able to post right now. Are you sick, what is wrong? I would like to compare my history to some of what you have written as I can definitely relate to you.
BJ

BJ,
I am back to posting. It is about the only thing that keeps me sane being able to relate to others with this horrible disease. I curse the day I went to the oral surgeon who said surgery was my answer. Since then I have went downhill and have not found my way back. TMJD is such a controversial issue and when it comes down to it, I don't think anybody understands or agrees to any one procedure. We are all shifted from doctor to doctor hoping the next one will know something that works. It costs so much money and for what??? Still in the same or worse pain and we don't know anymore than we did before we went to the first doctor. I fail to see the sense in it anymore...I can't fight a battle that has already been fought. I have to face reality, I lost!!!
Elaine

Hi Elaine,

I think I just read a post from you down under that said you also found out that you had neck -cervical problems. One of the things I found out last year from a Pain Management doctor was that I have degenerative joint disease high up in my neck, into my head, and he believes that the combination of TMJ and degenerative jont disease in neck are all working against me - creating head spasms that about drive me crazy. Have you had any success treating your neck problem? Thanks for all your great posts and time, Joyce

Joyce,
I haven't done much with my neck but there is a close connection between jaw pain and neck pain. The trigeminal nerve is integrated with cervical nerves. Typically in TMJ Dysfunction, the upper cervical is ubstable leading to chronic neck pain. The trigeminal nerve has also been shown to have the ability to modulate all spinal sensory input into the brain. It can make one feel pain when there is just a slight disfunction. Jaw dysfunction is known to have a strong effect on the neck and upper back muscles. As the trigeminal nerve becomes more tense, so does the cervical nerves and cervical muscles. That is why so many that have TMJD, also have myofacial pain syndrome.
One affects the other and itis mainly muscle and nerve pain, rather than joint pain.
Hope this helps,
Take care,
Elaine

Elaine,
I agree, TMJD is so controversal. Everyone has all the answers, but when it comes down to it, they are guessing and hoping for good results. I have put out so much money and getting nowhere fast. I am almost to the point of just leaving it alone. Nothing relieves the pain, in fact I think splints have increased it. I have had so many splints and so many adjustments that i have lost count.
Take care,
BJ

[This message has been edited by BadJaw (edited 10-26-2002).]

BJ,
Several seem to be having trouble with the splints. I for one, gave up. I am a clencher and splints made me worse. At least now, "once in awhile", I wake up without a headache.
Take care,
Elaine

Elaine,

If I am reading correctly, you say that the doctor who put the inplant in now wants to take it OUT and wants you to pay for this up front? Have you considered going to a lawyer?

Appauled,

Sapphie

Sapphie,
You are reading correctly. I had to pay upfront when the implant was put in also. That alone, should have told me something. At this point, I don't feel removal of the implant is going to make any difference painwise and the damage is already done to my condyle so I am in no hurry to do anything. I refuse to go into debt any farther with this.
Elaine

Elaine,
How long have you been having trouble with the implant?
I too, have the Christensen. Must have been an epidemic or was the "season" for the Christensen. Uggh,
I can't believe all the people who have had surgery and still have soooo many problems. Hindsight is 20/20
if we only knew then, what we know now.
Heres to better days....someday.
BJ

BJ,
I have had the Christensen since 1997. It never did feel right,even at the beginning. I always had the hung up feeling. Now I have the bone crunching sound on top of the hung up feeling. My jaw hangs up and I open as wide as I can to pop it and the bone sound is sickening. I have dealt with TMJD since 1985 and it is nothing but a ongoing nightmare with no ending. I don't think about getting better anymore, that way I won't be disappointed when it doesn't happen. I was very naive when surgery was suggested and I made the wrong choice. My fault for not researching it, but when you are in pain, you jump at a chance to feel better. Unfortunately, relief didn't last...
So discouraging. :(
Take care,
Elaine

Elaine,
I know of several with the Christensen. We seem to all have problems. I think it should be outlawed with all the rest of the jaw implants. How can so many people all be at fault,(according to the doctors) True story, when this surgery doesn't work, they think something must be wrong with you. Do they ever stop to think, something may be wrong with the implants? I don't know how metal against bone could do anything but cause further damage. Or am I missing something here?
Hope you are doing better.
BJ

Dear Elaine,
Just wanted to wish you well with your upcoming surgery. I know you have the jitters and I know why. But take heart! It's a new day, a new year and a new state. TThings will be great for you, I know it.
Love,
Donna

Hi Everyone,

Has anyone heard from Elaine and how she is doing?



[This message has been edited by thisstarr (edited 01-06-2003).]

I was reading this thread and it dates back to three months after I had my first back fusion. Anyway, things are looking up, I think :angel:
Elaine

Elaine,
I haven't checked the board in awhile...I keep going to this thread because the poems at the beginning really hit home. I think everyone should read them. I am seriously thinking about sending them to a few oral surgeons on my list of ######!!!!
BJ

Elaine,
your poem is how i discovered this board and it really made me cry. It really describes how i feel about this TMJ.
-Stacie

Stacie,
Actually these are not my poems but I have read them so many times and feel they describe TMJD much better than I ever could. I sympathize with anyone who suffers from TMJD, no matter to what degree. I hope one day people who don't suffer from it, will "understand" what we go through. The pain is so unbelievable, even for me...and I have suffered for 18 years :(
Take care,
Elaine

bump

Edited by TC

[This message has been edited by totallyconfused (edited 07-30-2003).]

[This message has been edited by totallyconfused (edited 07-30-2003).]

Bump.

Cathleen,
I don't understand enough about the splints to know what would help you. So far, I haven't found the right one for myself. I think the people to question on this would be Marlene and Cymy Sue. They are having good results and would know more on how to advise you.
Sorry but I really don't know.
Elaine

Edited by TC

[This message has been edited by totallyconfused (edited 07-30-2003).]

Bump

Hello all,
I read all the messages in TMJ reality and I am very sad to see how many people suffer from this horrible disease.

A TMJ specialist I saw, said that my condition only with surgery will be cured (he is an orthodontist so the surgery will be performed by a different doctor whoch will charge extra to the already exuberant treatment costs). He thinks my changes of cure are 80% with surgery and 40% without. Having read all the emails that refer to surgery in TMJ reality, I am not convinceed about his words any more, it seems that only bad things happened to everybody after surgery. The surgery he wants me to do is for bringing my displaced disk (right one) back into place (no implants suggested). Does anybody know about this type of surgery and complications? Why is it that one surgery often leads to another? Also he told me I have osteoarthritic condition at the joint. Do many TMJ sufferers have this and does anybody know how not to make it worse?

Thank you all,
I wish strength for all of us,
CaterinaGB.

Hi CaterinaGB,
Have you tried conservative treatment like a splint and therapy? I have the same condition as you - displaced discs, severe inflammation in the joints, and arthritis. I went to some oral surgeons a few years ago that wanted to do arthroscopic surgery to try to recapture the disc. I was seriously considering it with this one doctor because he seemed very confident that he could fix me with surgery. So I went back to him a few weeks later only to find out that he wasn't practicing medicine anymore. When I asked around, I found out that he has lost his license. I don't know why but I was glad I didn't go through with the surgery. I then went to more oral surgeons who scared me by telling me what can go wrong with the surgery. I don't want to scare you but this is what they told me can go wrong- they said they can hit nerves in your face causing facial disfigurement and that there is usually at least some temporary disfigurement. That made me decide not to go through with it. it was too much of a risk for me. They themselves suggested I try conservative treatment first. For some reason, these surgeries have a very low success rate. As I'm sure you've seen firsthand, not a lot of doctors are experienced with TMJ. It's very under researched and under advanced. From reading posts on this board, I learned that whenever you touch the joint it's never the same again. Scar tissue forms and then you have to have more surgeries to remove the scar tissue and it's a neverending process. Even just flushing the joint can cause the same thing to happen. Before you go ahead with surgery - something irreversible - make sure that you have tried everything else first. What treatment have you had? Only consider surgery as a last possible resort. The doctors like to make it seem like a very simple surgery - but if it really were so many people wouldn't be suffering like we are.
-Stacie

Cat,
Here is the surgery consent form. Lots of complications with this surgery that are not really explained to people. I didn't have arthritis in the joint before surgery, but now I do. So if they are saying surgery is a cure for arthritis, they are full of it. Any intervention into a joint is going to cause scar tissue. Some develop it worse than others and this is one of the main reasons for further surgery because the scar tissue closes you down again.

Stacie,
Glad you are on this board, of course I wish you didn't have to be here but.... Always makes me feel better to have someone to discuss this mess with. When I was looking for answers, all my answers came from the doctor. Obviously, had I found a board like this, I would have done things a lot different. A doctor doesn't always know best and I am living proof, as some of the rest on this board are. I never in my life, ever dreamed one little joint could cause so much pain and suffering in people. If I wasn't living it, I would never believe it myself.
Take care,
Elaine


The proposed surgery has been outlined for me in laymen's terms and possible complications and side effects have been discussed including ( but not limited to ):


___A.Objectionable scarring of the incision line, possibly requiring later revision.


___B.Postoperative swelling, discomfort, bruising of the area, bleeding, hematoma (blood clot) formation, and wound infection.


___C.Adverse or allergic reactions to medications oranesthesia causing multiple side effects, some of which may be serious.


___D.Foreign body reaction and (if used) rejection of implant materials.


___E.Malocclusion (change in bite) after surgery.


___F.Postoperative development of adhesions (scarring) within the joint space which may cause continued jaw dysfunction and decreased range of jaw movement or chewing difficulty.


___G.Facial muscle weakness, particularly of the forehead and eyelid, or inability to close the affected eye tightly, which is caused by injury to
motor nerves in the immediate surgical area. This weakness may be partial or total and is usually temporary, but may be permanent.


___H.Sensory nerve damage, numbness, or other sensory alterations which may be temporary or permanent.


___I.Ear problems, including infection of external, middle or inner ear, ringing in the ear, hearing loss or equilibrium problems.


___J.Freys Syndrome


___5.I understand that additional treatment may be necessary post operatively, including physical therapy, splint therapy, reconstructive dentistry,
orthodontics, jaw repositioning surgery, removal of certain fixation devices, or further TMJ surgery including total joint replacement, bone grafts, and
arthroscopy.


___6.I understand that this is complex surgery, and there can be no guarantee of complete resolution of my present symptoms or jaw dysfunction. Occasionally
there may be increased symptoms post operatively.


___7.I have been told of my option of a second opinion regarding this procedure from a qualified professional.
___8.Recognizing that during surgery some unforeseen condition may be discovered that might necessitate a change in approach or different procedure from those
explained above, I authorize Dr. ****o perform such
procedures as are necessary and advisable in the exercise of his professional
judgment.


___9.I understand that general anesthesia will be used for my surgery and that there is risk of serious bodily injury inherent in such anesthesia, including
death. I have been told not to have any food or drink for 8 hours prior to my anesthetic and that CONSUMING FOOD OR DRINK BEFORE INTRAVENOUS GENERAL ANESTHESIA MAY CAUSE SERIOUS COMPLICATIONS OR DEATH!


___10.I have discussed my past medical history with my doctor and have disclosed all diseases and medications, including alcohol and drug use (past or
present).


___11.I agree to cooperate with the recommendations of Dr. ****,
realizing that lack of cooperation may result in a less than optimal result. I have not been given any warranty or guarantee as to the result of the
proposed procedure.


___12.I certify that I have had an opportunity to read and fully understand the terms within the and that all the above blanks were filled in prior to my
signing this form. All my questions have been answered to my satisfaction and I am willing to undergo the proposed surgery.


I also state that I speak, read and write English.

Someone was asking about surgery. I guess if you made it this far, you know my opinion. After three surgeries my opening is now 10mm. For a year or so after surgery, the pain is better but once the nerves grow back, you are in for a world of hurt. My joint is almost gone, arthritis etc. The doctors tell you the joint will be destroyed without surgery but in my experience, surgery helped nothing.
Good luck,
Elaine

The doctors tell you, the joint will be destroyed without surgery! What is the explanation for the joint being destroyed "after" having surgery? What is the difference, either way it seems to be destroyed by arthritis, numerous surgeries, and all the complications that go with surgery..Scar tissue being the worst and leading to more surgery. Still waiting for my miracle solution..... :(
Elaine

Bumping this for the newcomers and for the rest of us too!! I keep re-reading them and they are sooooo true!

bump for new members

bump due to talk of Christensen's and surgery consent forms....