Join Date: Jun 2010
Re: Has anyone here been diagnosed with Ernest syndrome?
Amanda6 / Kim,
First off I guess it would be a good idea if I Explain that I am in no way shape or form a doctor of any sort nor should you use my experiences as guarantee's or answers for your treatment. Just a precaution of sorts so I don't get sued, but please dont get the message mis understood, I WANT TO TRY AND HELP YOU.
Secondly, if you have a pain in your leg you go into the doctors and you say "my leg hurts" correct? You do not go in and say "leg". When any dr or dentist tells you that you have "tmj" it is like them telling you that you have a leg. Its the name of the joint (tmj-tempromandibular joint), not the name of the condition that you 'may' have. So I would advise that if you see a dr who says you have "tmj" that you seek a different doctor/dentist because that dr is not very knowledgable about these conditions if he/she tells you that you have "tmj". Its is actually named TMD (tempromandibular disorder)
Ok, on we go, I know these few things are not your questions but a bit of insight from what I've learned will shed a bit of light on the situation...first, Dr. Ernest was actually a regular ol dentist who happened to take an interest into facial pain. He went to visit a doctor to learn a bit more about facial pain. That dr that he went to visit was actually the "father of tmj disorder" (drawing a blank wiith the name here). It was from there that Dr Ernest discovered Ernest Syndrome after he was well versed on the problems that TMD gave to people. Dr Ernest later discovered that there was more to the SML (stylomandibular ligament) than just a rubbery flap , it actually could get injured, and that was what was wrong with his wife who was suffering from facial pain.
Now, finding a doctor/dentist who is well versed in this sort of thing is almost IMPOSSIBLE. Dr Ernest has actually hand trained 3 dentists! And the other dentists/dr's who know anything about it are just on a whim reading an article on line like you and I - OR - reading about it in practical pain management where Dr Ernest is an editor and contributes his stories every couple of months.
Out of the 3 dentists Dr Ernest has hand trained there is only one of them still practicing, this being because of insurance companies and what they are doing with doctors. You see they have a big problem with people who are treating this symptom because they are dentists doing .....NOT dentist things....I'm dead serious, insurance companies are putting treating this to a stop because they will not pay back the doctors for their time nor will they cover the procedures to help fix nor diagnose. The dental board has actually put dentist/doctors out of practice for treating people without proper background knowledge of syndrome, doing "unsafe" procedures, etc, etc. Its a mess and a joke for sure!.
on to the actual questions you have...
It is very hard for any doctor or dentist to diagnose Ernest Syndrome because many have no CLUE what it is! I was actually going to see a dr in regards to getting off my painkillers, so an opiate addiction dr who by some miracle was versed in what's called prolotherapy and just knew what Ernest Syndrome was! I had absolutely no hopes of being cured at the dr who discovered it! But what he did to HELP determine if I did have Ernest was do an injection into my SML which is also called a "block". If you feel as though you have Ernest Syndrome you need to do some thorough research on finding a doctor who treats the Ernest Syndrome (which is not many!). I know there is a Dr in new Jersey (ira klemmons) who treats Ernest Syndrome , dr ernest himself, a few other dr's randomly whom I wouldn't entrust a lot into but it is just me. There is really no other set way to determine Ernest syndrome unless you happen to run into a dr who happened to hear about this once before or read about it. There are no special dr's who specialize in ernest syndrome, nada. A best suggestion is find the closest dr who performs prolotherapy (they say if you have suffered for under 6 months with ernest syndrome then prolotherapy may work for you, if longer than 6 months then radiofrequency thermoneurolysis would be a better option), see if they treat ernest syndrome at the dr who does prolotherapy.
Next suggestion is go to a facial pain clinic in your area, have them look you over for giggles and then say look I think I have this thing called ernest syndrome, can you perform the blocks that they are showing here and if not I NEED you to find me a dr who can. I have info and the actual material from dr ernest on where the sml is and how to look at things if you are a dr. I can fax you material on it.
It sounds horrible to say but your absolute best bet is to see dr ernest, he is in tennesee and is the absolute best person to diagnose you.
Unfortunately, the pain from ernest syndrome can be confused and coupled along with other issues that cause facial pain.
My points of pain in order from MOST SEVERE first and least closest to end...
Left jaw (down towards the rounded spot at my jaw, under my actual jaw bone), left ear, pain in what felt like my teeth), left temple area, some tender feeling behind my eye, pain in left side of neck, left shoulder.
The full readout on what is supposed to hurt for ernest syndrome. Everyone is different, there's no guarantees . What is supposed to hurt or bother you is; sml, ear, possibly tmj, temple,neck,pain behind eye, burning/tingling in throat and some hardness to swallow. These are all supposed to bother/could be all the symptoms of ernest syndrome. That doesn't mean you could have less and not have ernest syndrome..
What could cause or did cause me to have ernest syndrome???
A bad accident, a traumatic blow to the face/head, a jump off a roof, a BAD WISDOM TOOTH EXTRACTION.
Me for example I took 3 specifically remembered shots in the jaw AND I had a horrible wisdom tooth extraction. Some people actually have no kicker, nothing that injured it or hurt it, it just hurts.
How to differentiate ernest syndrome pain and tmd is tough but you can somewhat tell a difference and that is by knowing the things to look for with ernest syndrome now/here and kinowing what symptoms are from tmd. The most noticable difference is that the tmj is in front of (and a tad below) your ear and should give you pain chewing/eating and all the other symptoms that are KNOWN with tmd. Where as ernest syndrome does not give you pain when you chew, its very random and even sometimes the strongest of painkiiler do not stop the pain from ernest syndrome. Look aT all the areas of pain with ernest syndrome. If you feel like you have ernest syndrome my strongest suggestion is find the closest place to you (the few random places in usa who are not hand trained by the man, the legend, dr ernest) or dr ira klemmons or dr ernest himself.
I STRONGLY RECOMMEND IF THERE IS ANY WAY TO GET TO TENNESSEE TO SEE DR. ERNEST-go and see him. He is the most knowledgable person on this syndrome (thanks a lot to the a$$ hole investment firms...er I mean, insurance companies who won't let some doctors so much as help a patient who is living in horrible, unidentifiable pain).
Next, eagles syndrome from what I know is the same thing as ernest syndrome. If you have had mri's, bonescans, and x-rays like myself any extra bone would probably show as not normal on any of those tests.
Ok, so here's something that caught me totally off guard when I saw dr ernest but want you to know so you understand that nothing in life is guaranteed and if you are having a lot of pain you would expect it could be something in addition to possible ernest syndrome...with the pain you have it HAS TO BE something unusual right??
I was also treated for Tempral Tendonitus (aka. Migraine mimic) which are the the two tendons that connect your actual jaw to your brain/temple "fan" in your head, a totally different tendon/ligament than the sml BUT could also give you similar if not the exact same pains/problems as the ernest syndrome. This is also the reason behind what dr ernest thought of my temple/eye pain and my neck/shoulder pain! I was shocked because all the dr's told me I could have two things and just when I was sure I was figured out dr ernest was sold on the fact that I had temporal tendonitus based on his testing.. it all made perfect sense and since I had been through this much and was here with dr ernest the person who ALSO DISCOVERED TEMPORAL TENDONITUS ON HIS WIFE AS WELL was standing there saying I think you have both, you should be treated for both, that's my take but you can decide if you would like to have me treat it...
So, naturally, I had him do the rf procedure on me for ernest syndrome and for temporal tendonitus. The rf procedure is simple...its a needle that has microwave heating hot capabilities that will create a lesion (a very minor small cut) on your ligament/tendon and will in turn "nuke/kill" it and stop the nerve endings from sending pain signals to your brain anymore! Sounds crazy and scary I know but trust me, it saved my life..I was days away from leaving my pregnant wife, 3 children, and my 75k/year job because I felt horrible for what I was doing to these poor people everyday. They have endured so much and I just felt like they were owed more than this piece of crap of a guy I turned in to. I called the Ernest clinic and talked to cynthia, dr ernest's amazing, supportive wife and she explained they will get me in Monday (4 days notice) to try and help me out. I BAWLED TO HER and said I just can't live like this any more, you have to try and help me or I'm close to ending it if you cant/won't. She picked me up in spirit and my family and i went to tennessee from NY with every cent I needed to possibly heal everything.
The nice thing about dr ernest is that once he feels as though you have ernest syndrome he is not going to suggest you do the prolo, he will do the rf that day and it will have an 85% chance of being done! Soooooo.... worth every mile, penny, and minute.
Dr ernest treats ernest syndrome, temporal tendonitus, and another condition I am not well versed on that causes extreme headaches but stems from the back of our head which in turn needs the same treatment as the sml or temporal tendons but I had already had slashed by the brain surgery I had last year. So I probably wasn't suffering from that huh?
< edited >
Most dr's will probably be pushed into (from insurance-*if they even take insurance*) trying prolotherapy on you first. Remember they say if you have suffered for less than 6 months than prolo may help you, if not then it probably will not do it for you.. prolo is EXPENSIVE, PAINFUL, and you will not notice a difference until about 4-6 months have past. Dr ernest will do the rf procedure the day he rules that he feels you have it. No waiting, no prolo, that's it, its an 85% success rate. I can also tell you that the prolo is meant to toughen up the sml which makes penetrating the ligament for the rftn that much harder, trust me, I know and I lived I, dr ernest had some trouble completeing the procedure on me because of the prolo.
The procedure, dr ernest must tell you will be a little uncomfortable and that normal people will be sore but I didn't feel a thing and dr ernest and his wife were the most caring, gentle, considerate people I ever had the pleasure of meeting. It was truly ann amazing experience.
I was taking 4-30 mg oxycodones along with 4-80mg each day of oxycontin and since last Tuesday I've taken a half an oxycodone (the light stuff) maybe 4 times..? Super, dramatically less pain.
I will wrap this up now, sorry so long to get back to you, been very busy not hurting and leading a normal life. (Sorry, don't mean to rub it in, I'm hoping for you and plan on asking to have you put the prayer list at church that I just started attending this week; I have a lot to be thankful for now).
I've actually spoken to dr ernest and told him I've talked to both of you and he is hopeful that he can help you and I am hoping that you can somehow manage a way to see him.
< edited > I can say that if you have the symptoms of ernest syndrome and have been thru the works trying to find an answer, then YOU HAVE TO SEE DR ERNEST. YOU HAVE TO MAKE A WAYY TO GO SEE HIM AND GET YOUR LIFE BACK. I'm crying in bed while typing this on my phone and my wife thinks I'm normal for crying for someone I don't know, if that gives you an idea of what we have been thru and how I feel for you and hope I could help you. < edited >
Last edited by hb-mod; 06-24-2010 at 06:08 AM.
Reason: Please don't post personal info such as real name, email or phone.