TMJ Dysfunction, Where to turn for Help?

Emmet 1

Hello Guys, I just thought that I would share my experience with a horrible disorder that has completely taken over my life and a review of what is considered a specialist in this area.
I am suffering from crippling TMJ Dysfunction and after years of different appointments with everything from acupuncture to soul destroying medication, xrays, MRIs and all kinds of tests to eliminate more "sinister" causes of my symptoms I looked for a specialist in this area so that I may get my life back. I booked to see <SNIP> who is a cranio-facial dental specialist. After waiting 1 month for an appointment with this man I was given the grand total of 13 minutes of his time during which he physically examined my jaw and confirmed that there was indeed an issue with it. He then tried to say that I am suffering from migraines instead. Migraines is simply doctors language for ( You are indeed suffering from debilitating headaches but I have no clue what is causing them, here are some drugs)
I was really looking forward to meeting this man as I was finally going to get some answers and just maybe, a cure. He asked me about my psychological state as this issue is with me for 7 years. I told him I suffer depression and anxiety and he immediately tried to push antidepressants ( Why do these guys always try masking pain and symptoms with tablets?) I said I have no interest in these medications and I am here for a proper resolution. He then suggested botox which would cost me €800 per session and I would need a few sessions a year.
I asked him why he wasnt taking x-rays or ct scans or MRI scans since I was paying a lot of money for his time and he could not give a sound medical diagnosis without images of the area? He said your looking for a structural issue and thats not what we do.
To think the likes of this man spend at least 7 years training in a specific area of the human anatomy and actually cant (or wont) repair the area when faced with a medical issue and still charge through the nose for a 13 minute appointment.
What would happen if a mechanic couldnt fix a car when asked or if a roofer couldnt repair a leak in a roof? They wouldnt be long in business thats for sure! Its an absolute joke that we allow these charlatans to be paid what they get paid and in most cases do not cure a patients complaint. Dont get me wrong there are some good doctors out there with good hearts but until we have a health system that isnt motivated by selling drugs and actually getting to the root cause of an issue and curing it then we will never have the service that we as humans need and deserve.
Dont waste your money on this man.


What are my symptoms?

There are so many but I will write the main ones.

*Clicking / Crunching / Popping from the joints themselves

*Severe pain in face, head, back of head, sometimes my neck and shoulders also.

*Light sensitivity

*Watering eyes

*Sinus pressure and general facial pressure (I even had sinus surgery but it didnt help)

*Severe constant fatigue (Find it hard to get up every single day never get refreshing sleep)

*Throbbing headaches every morning like someone hit my head with a baseball bat when Im asleep.

*Ear pain, ringing in my ears, stuffy or "full" feeling in them.

*Loud noises hurt my ears, whooshing sound (like the ocean) in my ears sometimes

*Blepharospasm ( abnormal contraction or twitch of the eyelids)

*Uneven bite (I even got braces to straighten my teeth in hopes that they will help, I still have them on so the jury is out on that one for now)

*Puffy eyes

*Depression (Very severe for a few years)

*Anxiety (Crippling)

Thats all I can think of for now but its enough to be dealing with. I would love to hear if anyone else is going through this with the same severity as me, or better still if someone has reached the other side of this disorder after getting cured of it and how.

Thanks for reading I never write online I guess Im just reaching out for help as I have run out of ideas.

Emmet

btkm8unsl0w5r4

Antidepressants can often help in chronic pain condition due to their action on the nerves to stablise the activation gates rather than their antidepressant effects. Migrane syndromes and TMJD are show to be linked. CT scans and MRI dont usually show anything for TMJD disorders and chronic pain of the jaws. Botox can help relieve TMJD symptoms very well in certain patients. Straight teeth dont help, plenty of people with perfect bites have TMJD and plenty of people with crooked teeth dont have it. Lots of research has shown that there is no therapeutic effect of orthodontics on TMJD.

I think it unfair to focus your early morning posting ire at this specialist who has given you good advice. He offered some treatment options none of which your ready to accept. He will have quickly seen your not interested in his advice or treatment, and at that point he has to move on and give his time to the patients who will accept his help. This is your loss not his.

Introspection here is the key rather than externalization of the issue. Be aware that your mental health issues have a profound effect on your TMDJ severity and symptoms.

EoghanIRL

I think clinicians have to be sensitive when they mention the words anti-depressants or anti-convulsants to a patient. It's probably not what you would be expecting to hear on a visit to get something like atypical facial pain or tmjd examined.
However for example , a drug such as carbamazepine which is an aed can be used to treat trigeminal neuralgia.

As already mentioned these drugs have more pharmacological actions than just acting as anti-depressants. If you do some googling you will find that they are indicated for certain types of chronic, neuropathic pain etc..

Sounds like you have the wrong idea about the purpose of these drugs. Pain management is an important priority in treating a patient.
You often see with patients that their expectations of what can be done for their disease isn't in line with what can be actually be achieved by the clinician.
He offered options , you don't like them? Maybe you would be happier with a second opinion or a different clinician.

Big_G

Emmet, please read the forum rules - no dentist or clinic names are allowed.

While I can empathize with your situation, modern medicine does not have all of the answers about everything unfortunately. Sometimes with pain there is not a readily identifiable structural cause.

Oral Surgeon

OP, it sounds like your are suffering a great of pain and discomfort for many years. If this pain was due to some organic cause, then that cause would have become very obvious in the past few years, like a vague dental pain that is hard to localise initially will become a definite single tooth pain/infection with some time...

Whilst you have lived with this chronic pain for years, you must appreciate that this specialist has seen you once. Chronic pain is different to acute pain. It is well known that there is a definite link between chronic pain and depression. Treatment of depression can have a beneficial effect on your chronic pain. He will have a step by step approach in these cases. Some patients respond to the first line treatment, some the 2nd, 3rd or a combination of the 1st and 5th... it is often trial and error and see what works for you. The key is that you must try in order to succeed and nothing ventured, nothing gained. What do you have to lose by trying??

Don't get hung up on what the medication is or is often used for. I saw a lady patient last week who takes three viagra a day to treat her Raynaud's syndrome...!!

If this was easily treated then it wouldn't be going on seven years. The unfortunate reality is that often patients with chronic pain are never cured of it but given the right medications can reduce its severity to manageable levels and get on with life comfortably.

Again, with no obvious organic cause, there can be no surgical cure. Seeking active surgical treatment may result in more chronic pain......

Good luck op

Emmet 1 wrote: »

Hello Guys, I just thought that I would share my experience with a horrible disorder that has completely taken over my life and a review of what is considered a specialist in this area.
I am suffering from crippling TMJ Dysfunction and after years of different appointments with everything from acupuncture to soul destroying medication, xrays, MRIs and all kinds of tests to eliminate more "sinister" causes of my symptoms I looked for a specialist in this area so that I may get my life back. I booked to see <SNIP> who is a cranio-facial dental specialist. After waiting 1 month for an appointment with this man I was given the grand total of 13 minutes of his time during which he physically examined my jaw and confirmed that there was indeed an issue with it. He then tried to say that I am suffering from migraines instead. Migraines is simply doctors language for ( You are indeed suffering from debilitating headaches but I have no clue what is causing them, here are some drugs)
I was really looking forward to meeting this man as I was finally going to get some answers and just maybe, a cure. He asked me about my psychological state as this issue is with me for 7 years. I told him I suffer depression and anxiety and he immediately tried to push antidepressants ( Why do these guys always try masking pain and symptoms with tablets?) I said I have no interest in these medications and I am here for a proper resolution. He then suggested botox which would cost me €800 per session and I would need a few sessions a year.
I asked him why he wasnt taking x-rays or ct scans or MRI scans since I was paying a lot of money for his time and he could not give a sound medical diagnosis without images of the area? He said your looking for a structural issue and thats not what we do.
To think the likes of this man spend at least 7 years training in a specific area of the human anatomy and actually cant (or wont) repair the area when faced with a medical issue and still charge through the nose for a 13 minute appointment.
What would happen if a mechanic couldnt fix a car when asked or if a roofer couldnt repair a leak in a roof? They wouldnt be long in business thats for sure! Its an absolute joke that we allow these charlatans to be paid what they get paid and in most cases do not cure a patients complaint. Dont get me wrong there are some good doctors out there with good hearts but until we have a health system that isnt motivated by selling drugs and actually getting to the root cause of an issue and curing it then we will never have the service that we as humans need and deserve.
Dont waste your money on this man.


What are my symptoms?

There are so many but I will write the main ones.

*Clicking / Crunching / Popping from the joints themselves

*Severe pain in face, head, back of head, sometimes my neck and shoulders also.

*Light sensitivity

*Watering eyes

*Sinus pressure and general facial pressure (I even had sinus surgery but it didnt help)

*Severe constant fatigue (Find it hard to get up every single day never get refreshing sleep)

*Throbbing headaches every morning like someone hit my head with a baseball bat when Im asleep.

*Ear pain, ringing in my ears, stuffy or "full" feeling in them.

*Loud noises hurt my ears, whooshing sound (like the ocean) in my ears sometimes

*Blepharospasm ( abnormal contraction or twitch of the eyelids)

*Uneven bite (I even got braces to straighten my teeth in hopes that they will help, I still have them on so the jury is out on that one for now)

*Puffy eyes

*Depression (Very severe for a few years)

*Anxiety (Crippling)

Thats all I can think of for now but its enough to be dealing with. I would love to hear if anyone else is going through this with the same severity as me, or better still if someone has reached the other side of this disorder after getting cured of it and how.

Thanks for reading I never write online I guess Im just reaching out for help as I have run out of ideas.

Emmet

Dianthus

Emmet 1 wrote: »

after years of different appointments with everything from acupuncture to soul destroying medication, xrays, MRIs and all kinds of tests to eliminate more "sinister" causes of my symptoms I looked for a specialist in this area so that I may get my life back.....I asked him why he wasnt taking x-rays or ct scans or MRI scans since I was paying a lot of money for his time and he could not give a sound medical diagnosis without images of the area? He said your looking for a structural issue and thats not what we do.
Had he copies of your previous medical investigations/reports? Had you been referred to him by another health professional?


To think the likes of this man spend at least 7 years training in a specific area of the human anatomy and actually cant (or wont) repair the area when faced with a medical issue and still charge through the nose for a 13 minute appointment.

There's a really interesting book called "Blink" by Malcolm Gladwell. Sometimes in life& in medicine, less can be more. You listed 14 main symptoms. Add in minor symptoms, & you're probably looking at about 2-3hours consultation time. I got a bit confused& disorientated myself even *reading* the list(& now, every sympathy towards you in the middle of it all).... sometimes practitioners have to hone in on what they consider to be the crux of the issue& go from there.
Research has shown that patients judge clinicians not solely on their medical prowess, but on the amount of time (or lack thereof) spent with them at initial consultion, & their "bedside manner"(or lack thereof). Personally, as a patient, I prefer an efficient& business-like approach; but this would be a minority view amongst most patient groups.
A pain specialist I once heard in a lecture said he worked a lot in conjunction with a clinical psychologist. A large proportion of his clients were high achievers with OCD tenancies, & this manifested itself as a physical symptoms --despite its' root cause being psychological. Not saying this is the case with you; just that it's a mistake to underestimate the power of the human mind.
After 7 years, you're disheartened & in considerable pain; it's understandable to feel frustrated& to want a concrete diagnosis& definitive treatment. Sometimes you find that there is a magic wand that will alleviate/cure your symptoms...but you have to believe in the magic first That's hard after all these years. Try to put some faith in this specialists' credentials, knowledge& experience. Otherwise, request to be transferred to another practitioner.
You have complete autonomy over your own body& are in complete charge of your own decisions.
Wishing you all the best, & hope that you find a cure.

nettlesoup

OP, I have TMJ but the symptoms were never as severe as yours.
I got TMJ from clenching in my sleep as a result of poor dental work - crowns and root canal through a crown.
After having the dental work I started constantly rubbing my tongue against the problem area. This habit kicked off clenching in my sleep at night. The problem became utterly consuming and affected many aspects of my life including sleep, memory and lead to huge problems with anxiety and worry. I also thought I was the only person in the world that had such strange problem.
A few attempts by the same dentist to correct the problem were unsuccessful and it dragged on for many years. During these years I also visited other health professionals because of the problem. I went on anxiety medication for  a while. The crowns eventually fell out and another dentist replaced them which helped a lot.

With regards my TMJ I never had too much pain just constant popping. After 5 years I visited a TMJ specialist
who diagnosed the clecnhing and made a TMJ splint. This helped and I also started doing TMJ execrcises
Today my TMJ has much improved but not completely gone. if I was more disclipined with my TMJ exercises and other aspects of my life then who knows. You may have tried all this already so my post might not be of much help. If you have any questions you would like to throw my way please feel free to.

fryup

^^^^^^

do ever put a warm cloth to your jaw helps? or use voltoral ?

Susie564

I haven't logged in here in ages!! Of all my life problems, dental is no longer one of them!

Emmet 1 wrote: »

What are my symptoms?

There are so many but I will write the main ones.

*Clicking / Crunching / Popping from the joints themselves

*Severe pain in face, head, back of head, sometimes my neck and shoulders also.

*Light sensitivity

*Watering eyes

*Sinus pressure and general facial pressure (I even had sinus surgery but it didnt help)

*Severe constant fatigue (Find it hard to get up every single day never get refreshing sleep)

*Throbbing headaches every morning like someone hit my head with a baseball bat when Im asleep.

*Ear pain, ringing in my ears, stuffy or "full" feeling in them.

*Loud noises hurt my ears, whooshing sound (like the ocean) in my ears sometimes

*Blepharospasm ( abnormal contraction or twitch of the eyelids)

*Uneven bite (I even got braces to straighten my teeth in hopes that they will help, I still have them on so the jury is out on that one for now)

*Puffy eyes

*Depression (Very severe for a few years)

*Anxiety (Crippling)

Had all those (with the exception of bite issues) and for about the same time, so I can definitely empathise with what you are going through.

I also had little in the way of scans, barring a couple of OPG's, but I don't think they showed anything relating to my jaw. I can also say that a course of Prothiaden (commonly prescribed as an anti-depressant, but also for pain) were a big help to me.

I'm no expert and can only talk of my own experience - I saw a maxillofacial surgeon, had surgery (not quite as straightforward as that!) and have little/no symptoms since. What I do get now is temporary & easily managed. Long may that continue!

That's not to say my solution will be your solution but I'm happy to answer any questions about my treatment if you feel it would be of help. Feel free to pm anytime.

I got a lot of good advice and support through this forum at the time.