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Old 02-10-2013, 03:24 PM   #1
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Need to get checked for tmjd- advice please

Hi guys,
I've posted a couple times in this forum, but really didn't believe my symptoms could be related to tmj disorder. Please do not be offended, but I thought the mention of it by my ent was a cop out because he couldn't figure out what was wrong with my 'clogged' ear. A very brief history: I developed Eustachian tube dysfunction after a bad cold last January. It didn't clear despite aggressive treatment and I was sick of clogged ears so I broke down and had Eustachian tube dilation surgery last June. Sweet relief! But it was short lived. I had a flare up of the clogged sensation in September and thought my ETD was back again. But extensive Eustachian tube tests showed it wasn't. I didn't believe it. I spent 2 months popping the heck out of my ears till for whatever reason, the clogged sensation gradually disappeared. I was told it was an allergic inflammation of the Eustachian tube, and started allergy shots, and when it got better I assumed that it was allergies (which I have pretty bad). Last month, I was eating my cereal at breskfast and notice a strange 'tug' in my cheek area that sent an odd sensation up into my left ear. I took some ibuprofen and it seemed to calm down. The next morning I woke up to a 'clogged' ear. It pops quite easily, which would err on the side of no allergic inflammation in my research, but I could be wrong. I made the usual ent/audiologist rounds with no result. I was told to just remain on allergy therapy and wait it out. No Eustachian tube problems were detected at that time. Normal middle ear pressures.
I've started having a 'heaviness' and 'tightness' in my left cheek area occasionally jaw joint in the past couple of weeks. Occasionally the feelings happen on the right side now too. I get actual ear pain, like a massive infection, but have no infection and a ct scan with contrast revealed nothing remarkable. Sinuses and brain were ok. There was no ct scan of the tmj because the ct scan was done at the ear because my pain became so bad that I had to leave work early.
Friday night I came home from work hysterically sobbing because I felt like my eardrum was going to burst with pus or something the ear infection type pain was so bad. I broke down and took 40 mg of prednisone that I had leftover from last month when my allergist prescribed it for possible Eustachian tube swelling. Within a couple hours I felt better and was able to go to bed. My husband called our dentist that night too and told them about my ear pressure and pain and that my ent and an audiologist couldn't find an explanation. They have me an emergency appt for Tuesday. I'm not sure what they're going to do.
I know tmjd can present with ear symptom before jaw symptoms. I just can't imagine the pain and pressure is coming from anywhere else but my ears, probably because last years experience with Eustachian tube dysfunction left me a little psychologically scarred- I'm terrified of my own ears.
I continued with pred and will do so until Tuesday at least. I hate pred but it seems to help whatever is going on in there. I'm one of the managers of a retail store and must be able to talk properly at all times. Luckily I've had 3 days off but I'm worried about going back. The heaviness in my cheek area and sometimes in my jaw joint itself makes me not want to talk. And I've noticed increased ear pain after working a long shift when I'm basically talking all day. I cannot take any painkillers because I have bad reactions to them which is unfortunate.
So if I explore this tmjd avenue(I still can't believe I may have this), what can I expect? I'm seeing my regular dentist on Tuesday like I said, and he's a very awesome guy- I know if he suspects this disorder he will try to find me the best dr to treat it. But I'm lost on all these other diagnostic tests and all. I called a tmj clinic in my area to just find out what they do, and apparently on the initial visit they do an X-ray specific to the joint and an ultrasound. They also order an MRI if need be. This seems like alot. Trying to sort thru all of this is becoming a nightmare. Plus my ear still feels 50 kinds of miserable and I fear that it'll spread to the right ear. Right now I'm taking pred, minimizing chewing and talking, and icing the area for a few minutes spread throughout the day. I tried heat but it felt worse for some reason afterwards. I've also taken an occasional klonopin to help me not tense up when the pain in my ear gets excrutiating ( I am prescribed this for my pre existing anxiety disorder).
Help! I've read some of the posts here already but I'd like to know if any of you tmjd veterans think in your opinion, this sounds like a tmj problem. I'm going to a dentist, am under medical care, etc, just wanted some opinions. Could I have messed up my tmj joint or muscles last year when I yawned excessively to try to pop my ears before my surgery? Or does this thing come on suddenly? I have a family history of osteoarthritis (dad) and he told me he occasionally experiences popping and cracking in his jaw joints, but had no pain. Freaking out here!
Jen

 
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Old 02-10-2013, 04:46 PM   #2
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Re: Need to get checked for tmjd- advice please

My first symptom was a "stuffy" ear that wouldn't pop. It stayed that way for over a year before I found treatment and it gradually got better. A few months after the stuffiness started, I developed ear pain that felt like a bad ear infection. I also had some tinnitus and eventually developed some "numbness" in my ear lobes as well. There were many nights that I was up at night with the pain and wanted to cry so badly because of the pain. I went to my ENT a few times. He is an excellent doctor and has helped me with other issues for many years. (Sinuses, allergy treatment and immunotherapy, asthma.) He did examinations, scopes and even a brain MRI and everything kept coming back normal. Eventually, he offered to try a tube in my ear to help, but I decided to seek out other options first. I also went to a couple Audiologists. Physically, they couldn't find any problems with my ear. Unfortunately, I'd developed some significant hearing loss. I get tested regularly because I already had hearing problems from birth in one and my "above normal" other ear lost a lot of hearing in just a year. After all those months of issues, I came across something on the internet that lead me to search TMJ. That was when I suspected I had TMJD.

I went to my dentist. He said maybe and recommended me to a TMJ dentist who had a 100% TMJ practice and taught at a local large university. I spent over $1000 for testing with him and a couple visits only to have him offer me no support. It took me many months to save more $.

In the meantime, I did a lot more research and found another dentist (functional orthodontist) to try. I knew from my first visits with him that he would be able to help me. He was much more thorough and I could tell he had a lot more training in this area. I highly recommend seeking out a holistic Functional Orthodontist with a lot of extra training in TMJ treatment and Orofacial Pain treatments. If you can't find one, try seeking out trained Neuromuscular dentist.

Tests he did included:
-Thorough medical and dental history
-Range of motion assessment
-muscle palpatations
-MRI of the jaw by a specific radiology place. Evidently it takes a special hand to do good tmj MRI's. The range of "normal" for tmj discs is huge and often radiologists read normal even when you have a disc coming out of place enough to cause problems.
-3D Cone Beam CT Scan-- this is a 3D x-ray that the orthodontists used in their offices
-joint vibration analysis
-computerized jaw tracking
-occlusal scanning
-nasal airway assessment
-adrenal assessment

The testing confirmed I had TMJD. It showed degeneration of my condyles (worse on my "good" side ironically), my discs had slipped some, bite issues, and muscular issues as well.

I started treatment with Phase I splint therapy. This involved use of a lower mandibular repositioning splint. This type of splint has bumps on the top of the splint that correspond to your upper teeth. For me to bite down, I had to my lower jaw slightly forward and to the right into my "natural" bite. It took some getting used to, but eventually the tight muscles in my jaw and around my ear started loosening up. My Orthodontist also customized an upper splint that I wore at night that had a wedge that came down behind my lower teeth and kept my lower jaw from falling back when I was laying down. After about 3 months with the splints, my ear pain was significantly better and my stuffiness was better. PT also helped with the constant muscle spasms I hadn't realized I'd been having. My PT was trained to do orofacial trigger point work on those muscles around my ear and in my mouth. She also worked on my neck muscles that had tightened up with all the ear issues. When my ears hurt the most, my ENT helped me out be giving me a couple weeks of low dose muscle relaxers.

Many dentists really don't know a lot about TMJD. They also don't all have other dentists they know of to do a good referral for TMJ treatment. Sometimes you luck out. Other times, you may need to do more of a search. There is a thread at the top of this board where other people have shared some of the dentists they have had success with.

There is a great book that came out about 1 1/2 years ago that you may find helpful. It came out after I'd gone through all my initial stuff and I would have saved tons of money at specialists if I'd read it first. It is called The TMJ Healing Plan by Cynthia Peterson, PT. I highly recommend it to help you through your journey. It can help you a lot in your discussions with your dentists, doctors and therapists.
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Asthma, Allergies, severe LPR/GERD, TMJD, Hearing Loss, Ulnar Impaction Syndrome, Shoulder Impingement, Plantar Fasciitis, DeQuervains, Hypermobility, possible Ehlers Danlos Syndrome

 
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Old 02-10-2013, 05:01 PM   #3
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Re: Need to get checked for tmjd- advice please

Thanks for the hug and the info MountainReader. I am going to take your advice and seek out a functional orthodontist. My question is- how do you find one? I tried googling it with my zip code just now and alot of orthodontists came up but I'm not sure they're all what you described. I guess I can call each one, but what questions should I ask. I want to be careful with our money because I've done the spending $1000s thing last year trying to fix my ear and really could've saved alot if I'd found the right ent in the first place. My ent that did my Eustachian tube dilation talked to me about tmj the first time my ear 'clogged' after my surgery. He felt inside my mouth along the cheek and towards the back and said that my muscles were spasming. I started to think he was just being lazy and was saying this was happening because he didn't know what was going on. Do good ENTs recognize tmj do you think? He was so sure...
What should I be looking out for with regards to specialists trying to do expensive treatments with no relief if I do have tmj disorder?
Jen

 
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Old 02-10-2013, 06:49 PM   #4
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Re: Need to get checked for tmjd- advice please

It is hard to find orthodontists trained in TMJ treatment because there is no specialty out there in TMJ. You will need to search and ask questions when you call around trying to determine how much extra training the orthodontist has had in treating TMJD. Some of the organizations that many well trained TMJ specialists, incuding mine, belong to are: American Academy for Craniofacial Pain, American Academy of Dental Sleep Medicine, training reaching the FAGD or MAGD level with the Academy of General Dentistry.

I think the best way to know what questions to ask is to really educate yourself. The TMJ Healing Plan book is a great help. Asking about their training and approaches is good too. You don't want a dentist who jumps into wanting to permenantly change your bite. Most people don't need that. Also, do they work in conjunction with other specialists? (Cranio-sacral therapists, PT's, massage therapists, doctors, etc...)

Personally, I'd avoid specialists who want to use an NTI splint. I've had a couple of them over the years and they were a total waste of money for me. They made things so much worse than without the splint.
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Old 02-13-2013, 06:23 PM   #5
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Re: Need to get checked for tmjd- advice please

Oh yes - ear problems were my first symptom and i too have horrendous environmental allergies. Zyrtec-D helps some. i don't know if I will ever get rid of the stuffy/popping ear.. but at least they don't hurt anymore (knock on wood!)

I found my dentist through the American academy of craniofacial pain. Look for someone who treats at least 50% of their practice TMJD. Don't be afraid to call and ask specific questions. Get on their websites.

There are many things that can cause TMJ problems - trauma (car accident/blow to the face/long dental procedure), lax ligaments, or I believe - for some of us - just genetics make us more predisposed to problems. I will never know what "caused" mine, but do not panic. There is treatment! The more you panic, the more you will freak yourself out and it just becomes a horrible vicious cycle.

For the time being - moist heat helps me a ton with those pesky ears!

I like to think that Van Gogh had TMJD and that's why he chopped off his ear

 
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Old 02-13-2013, 06:43 PM   #6
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Re: Need to get checked for tmjd- advice please

Thanks for the replies. I had a neurologist appointment today at my pcp's insistence that I must be suffering from some never before heard of type of migraine. The neurologist said this was not migraines because there's a typical cluster of symptoms that occur in both typical and atypical migraines. She was able to rule that out right away. We talked for about 20 minutes (alot for a specialist) and when she physically examined me (stroke test, etc), she started to feel my tmj area. She noticed a hard lump of what she assumed was a muscle in spasm right at my jawline on the left side (ear pressure side). She let me feel the difference between the sides and I even could feel it. She decided to order an MRI of the tmj and carotid(sp?) gland. I have no idea what this other thing is but she said it could be inflamed. She told me the muscle (if that's what that lump thing is) could be spasming and putting pressure on facial nerves on the left side which is where I've been getting occasional numbing/tingling. She felt pretty confident that there was some muscular involvement in the ear pressure issue, she said muscle spasms can cause other muscles to spasm in the area so I guess that could cause the ear thing. She prescribed flexeril 5mg to try to loosen things up in there but I'm a little hesitant to take it. I still have klonopin which I occasionally take for anxiety but which also can relax muscles. I might just stick with that till there's a firm diagnosis. I noticed severe tightness (spasms?) in my face, head, ears, and neck after she palpitated my face so much. I came home and tried to take a nap and breathe through it, but it didn't work, so I took .25 mg klonopin and it seems to have calmed at least the facial part of the spasms and some of the ear pressure. Hoping for a firm diagnosis soon so I can start to feel better. Has anyone tried klonopin/benzodiazepines for tmj muscle spasms/tightness? I feel like it definitely took the edge off of whatever this is.
Jen

 
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Old 02-13-2013, 07:09 PM   #7
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Re: Need to get checked for tmjd- advice please

My ENT has prescribed me Flexeril a few times over the years when my muscle spasms are at their worst and causing me significant ear problems.

I combined the PT and trigger point release work with my splint therapy because they all work to help loosen up those knots and spasms. Releases of those tight trigger points can be very painful in the mouth but they really do help.

Just a note on the MRI. According to my TMJ orthodontist, for radiologists the range of "normal" when reading the location of the discs is huge. He said they can be slightly displaced and you can still have "normal" readings. If that is the case for you, you might question it further if you really think this is your problem.

My ears went numb for a while (6-8 months) when my TMJD symptoms were at their worst. It was before I had my diagnosis. I even had CT's and a brain MRI during that period because they were checking for MS. Good news is that with the splint therapy and PT they eventually got better.
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