Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
I have to chime in and say that the ENT that I've been seeing for the past year also went down the TMJ route. I feel that he went down this route because he had no more answers for me. I went to a TMJ specialist and everything was normal. He even expressed his frustration about how tons of ENTs refer to tmj specialists when they don't have any other solutions to offer patients. That said, I agree that the ENT community is lacking in many ways. Nasal spray seems to be the number 1 medication prescribed for ear problems (which doesn't make sense really) and in my opinion, it has a placebo effect.
Let's not lose hope-I will keep both of you girls in my prayers!
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
This hospital is a "teaching" hospital in that, students wanting to be Drs or nurses work along side the Drs there. The Dr. I am going to see is a professor at the University there and holds a MD degree and a PHD so he is very educated.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
All teaching hospitals have experienced doctors who then turn your actual care over to students. I know they have to learn, but they're not going to learn on me. Just beware. If you can have a written contract with your doctor that he will be the only one to do any surgery on you, not just observe or supervise, that would be better.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Thanks for agreeing with me Tati! I am going to keep going till I get my answers. No giving up here. Even if it means waiting a year to see Poe. If you look up steroid nasal sprays and Eustachian tube dysfunction, you will find clinical research suggesting that they are ineffective at treating ETD. Because, as you noted, they're NASAL sprays. Personally, I have swollen turbinates because if my chronic allergies so I doubt that spray gets past those big old things. The e tubes are in the back of the throat, level with the nose. There no way that spray is reaching that far back. One ent site online tries to negate CLINICAL RESEARCH and say that maybe the reason the steroid stays didn't work was because the patients were using them wrong. Apparently there's a special way to use them that only this ent group knows. They also suggest using valsalva after the spray to 'squeeze some of the medication into the tubes'. Lol. If you use your common sense, you will know that this won't work. So ridiculous. Research proving it doesn't help and then trying to negate the research... There's no direct way to reach these things, except lately with the balloon dilation catheter. I think that's why some ENTs Rx prednisone, in hopes that it will reach that area where its swollen and reduce it. I think, and I may be wrong, that its hard to even get systemic drugs to reach the e tubes because circulation there isn't the best, much like the sinuses. I suspect it would take long steady courses of pred to bring down that swelling. I can tell you that I've done the pred and it does help, but takes several days to even START helping, and by that time, I'm tapering off. I'm way to scared of the side effects of steroids to ask for a longer course. Have you ever tried oral steroids like pred? I'm telling you, after a couple days, the difference is huge. It's just unfortunate they have so many adverse effects.
Ethel-
I think you might have the wrong idea about teaching hospitals. They actually are great places to go because they are often on the forefront of medicine because they have so much technology and funding available to them. If you went to a teaching hospital, you would be seen by a dr who has years of experience in their field, who may also be a director, professor, or associate professor of the department to which their field belongs. These are the drs who are training medical students to become drs. They are oftentimes some of the top professionals in their field. You may have a med student meet with you first to assess you (as part of their training) but this is usually optional, and the actual dr will see you right after. No one but the actual dr will diagnose and/or treat you. Teaching hospitals are where many go when they can't be helped by suburban drs. These places can be great honestly.
Sarah-
The dr you want to see sounds like he has great credentials! I hope you will get in to see him quickly, I know sometimes it can be a couple months. If you mention the balloon dilation to him though, don't be shocked if he isn't so enthusiastic about the idea. The ent I saw today was at a top rated teaching hospital and she said that as of yet, the ent community doesn't accept this as a good form of treatment because it is fairly new and needs more clinical research. She said perhaps in time it will become the new standard of treatment, and replace all the hokey nasal sprays. Most drs don't want to do this procedure either because its still newer, and some insurances won't pay because there's not enough research. My insurance wouldn't pay, so we paid out of pocket because I was desperate. You still have the dr weeks option though, if this continues and you don't get answers or help from this new dr you want to see.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Jen- Thanks for clearing up the medical university dr. you explained it perfectly! I am planing on bringing them the video of the eustachian tube dilation but not thinking they will be too excited or actually do it for me but yes, I'll keep Dr. Weeks in my back pocket
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Jen- the crackling sound sounds like it's coming from my ears too. Especially my left. I also feel the TMJ pop on the right at times. When licking teeth or something like that. But the worst is the inflammation in my masster muscles causing me to not be able to open to eat normal foods. I have to spoon feed or tear stuff and shove it in there. And soft things only.
If this surgeon thinks it's not Tmj I will definitely see an ENT. The most I will spend with the Oral surgeon is 200 dollars (which is A LOT!) but that is only if I get x rays. I am sure he will feel my joints and say I need them, as the indentation on my left side is larger than on my right, like the bone on the left is lower than the bone on my right, by my ear opening.
The grating sound is the worse!!
__________________
Mild Scoliosis
Tilted Pelvis
Lower back problems
Sciatica off and on
RLS
TMJD
Anemia
Small hernia by belly button (due to pregnancy)
Mortons Neuroma in right foot, by toe
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Girls-
Arrghh! Ear craziness today! No idea what's going on except that its been getting ready to thunderstorm out here. Yesterday I actually had pain which was super irritating because I was working and dealing with it ALL DAY. I have been really good about taking my Zyrtec lately since my ridiculous allergies are in full swing . I'm off today thankfully because I start to look a little silly sitting there all day at work popping my ears. I'm sure people are starting to think I'm wacko and/ or trying to take up scuba diving. What helps you girls when you're ears are getting more annoying than you can handle? Well, besides ear popping because I can do it like a scuba diver, but it doesn't relieve the pressure sensation.
Thanks!
Jen
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Jen,
I know exactly how you feel, I’m so sorry. I had a horrible time yesterday with my ears and was in such a panic. My ears are a little calmer today, but the crunching sound when swallowing is what gets on my nerves since it’s constant. Then I have the horrible fullness as the day progresses….ughhhh!
The psychological aspect of all of this is probably the worst part about it. For me, it’s the lack of control, but we can’t control everything in life, especially our health—it’s just the way the cookie crumbles, you know? I guess all we can do is accept that at this point in time we are going through this but may not be permanent! That was your own advice to me and those are very wise words which have kept me going these past two days. One day at a time, tomorrow might be better. Remember, this is a part of who we are right now, but maybe not tomorrow, or a few months, or even years. We have to trust that we will be ok!
I’m actually starting to not feel the need to tell people about my ear problems for fear of sounding crazy, so it helps to know that there are others that understand what you’re going through, and they offer some support through tough times. Like I said before, I guess the only thing we can do is take it one day at a time and hope that in time the body will heal itself. Honestly, I believe the body does have the capacity to heal itself under the right circumstances. However, in order for this to happen, the body has to be stable; no stress/anxiety/depression, proper diet, good sleep habits, exercise, etc. The problem is, that these ear problems cause those exact same things to happen to our body in the first place, so it’s a vicious cycle. I myself am not sleeping well, stressing and obsessing over this problem, losing weight, so that’s no good.
I propose the following: let’s focus on the good aspects of our health. For example, we are not missing limbs, have our eyesight, and even though we have these annoying ear symptoms, we can hear! I think the only way to deal/cope with these problems is being mentally strong (easier said than done, I know). It’s easy to become so engrossed in this one problem that we’re having that we sometimes forget that there are others worse off! Every time I think about how horrible I am feeling, I think about the Boston marathon bombing victims, I can’t imagine their physical and emotional pain. I’m not saying this will help you, but it helps me somewhat.
In the meantime, I am here if you need someone to listen to your frustrations. I always have my email open at work, so I pretty much know when there’s an update to the board and I’ll reply real soon.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
The only thing I can think of is Zyrtec D or some type of decongestant, like sudafed. Also the mucinex PE- the generic one works great.
I was sick all last night- stomach flu- and I woke up with leg cramps off and on. I slept in till noon today- told work I wouldn't be in- had to cancel my appt with the oral surgeon regarding a consultation for TMJ and now I am going to see him tomorrow. My ears aren't bad today- but I've been inside all day and laying around. I had the WORST sore throat last night- thought it was strep. I gargled with salt water and then before bed I gargled with half peroxide and half water. Today NO pain. I think that stuff really works. My husband rinses with hydrogen peroxide and water (mixed) every single day.
__________________
Mild Scoliosis
Tilted Pelvis
Lower back problems
Sciatica off and on
RLS
TMJD
Anemia
Small hernia by belly button (due to pregnancy)
Mortons Neuroma in right foot, by toe
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Hi Jen,
I posted a message earlier but for some reason it's not showing (wondering if I posted wrong).
I'm so sorry you're having such a hard time with your ears. I had horrible pressure yesterday and again today (it usually gets worse as the day progresses). My main complaint is the loud crackling every time I swallow, it's just too much at times. My ear also pops with certain head movements, weird.
Please know that you could come here to vent at any time. It helps to know that there are others out there who can relate. We have to try to stay positive, remember, one day at a time. I feel that the more stressed we become, the less we allow our bodies to heal. I'm trying to focus on relaxing my thoughts and body, easier said than done. Also, it sometimes helps me to remember that there are people who are worse off. It kind of puts things into perspective for me. Hey, at least we could still hear, right?! Every time I get down, I try to remember this.
By the way, my doctor gave me Klonopin in the hopes of helping me with my anxiety. Just curious, do you take it every day? I was given a .5 dose...
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Mandolyn,
I'm curious, do you experience the crackling sound every time you swallow? I developed this symptom about a month and a half ago, and it's so distressing!
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Jen did you have any balance disequilibrium symptoms with all this, almost 24 7 unless sitting. I have severe TMJ dysfunction and tinitis also neck issues, dystona, my head is tilted and off center SCM huge on left side, ears itch intense like mad...so sensitive to noise, but no real ear painm just jaw neck and dizzy is the worst but i am not light headed
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Tati-
I usually take a klonopin a day just to take the edge off my anxiety. I take the same dose as you. I do agree that the panicking makes it way worse. I schedule a tympanogram for Monday. I'm pretty scared that its gonna show something awful (stupid anxiety), but I will just have to wait and see. I hope you find the klonopin helps. Thanks for the support today.
Here4u-
I don't have dizziness. I have experienced occasional dizziness, but its usually related to when I am starting to have a panic attack. The actual symptoms themselves don't cause dizziness. Do you have problems with ear pressure at all? That's a big complaint for me, strangely though, I can pop my ears.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Here goes. My TMJ symptoms are pain, all over the joints, even the bottom jaw line, it switches around side to side, ear ringing popping or crackling, which is separate from the clicking, and the clicking is mostly left side, because they describe as permaneent lock, my jaw opens 7mm in AM and by 3 it will get to 18mm max. I do not really feel a pressure in my ears, more in my head, so much who knows, if it is in ears also, my ears do get wooshing noises, they itch like mad from throat to ET, I can itch my ears by sticking finger in and also doing this thing with my throat and feel it all the way through like its connected, and its wonderful...nothing like a itch that you are able to SCRATCH, but thats the only plus side.
My neck as said SCM elongated and hard as rock from under jaw on left side to base of neck, which tilts my head to the right side now the right side of SCM twists back further, plus there is a verticle like swelling on top of the SCM or maybe that is a scalene, but the off balance dizzy ( not light headed ) is horrific, I get more symptomaci with all of it standing STILL, as opposed to continuous walking, oddly enough.
I had my tonsils out over 24 years ago, I am 47 and have severe problems in last 3 years, my whole spine feels stiff and so do my legs. Laying down is worse for me as far as neck and jaw pain, and ear ringing, which changes pitch a lot, from loud to a lower buzz like a flourecant light.
I no longer can work and I used to work 2 jobs at once for 10 years, now if there was a job like Forest GUMP when I just kept walking , ( except for my hip and leg and back stifness that would be best for my dizzy issues, I am a mess, I HATE this, its not living at all, I rarely leave my house, it is all that bad!
I search for anyone with my same symptoms looking for some miracle cure others like me may have found, I am sorry to hear about you too, what can any of us do!
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Hey to all I've been keeping up with everyones posts and i totally agree about stressing over it to much we only make things worse. Jen, sucks to know your still dealing with your ears im the same way over here although sometimes not so bad and others extreme pressure, it's just so weird. I went to an otologist a few weeks ago and he gave me a tymponogram test and said i had positive middle ear pressure and tha my e tubes were functioning fine but then diagnosed me with patoulous eustachian tube. I told him that i didn't have autophony but he said not everyone experiences that, who knows. Told me to give it another month and if not better to give him a call back and see what we can do from there. Im just so fed up with this problem but oh well what can you do but take it one day at a time. I just can't see this problem lasting forever it has to pass I sure hope so. At least we have each other to vent to and i think that really helps alot on our weak moments, trust me everyone y'all are not alone.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Jen, took my first dose of Klonopin last night and although it doesn't completely take away the anxious thoughts, it helped tremendously, and I was able to sleep. Now I'm afraid I will build a tolerance to it, or even worse, an addiction!
I'm on The bus right now and I don't know if it's the movement, but the ear pressure is horrible! Does this happen to you when you're in a car? I've never had problems when flying, but now I'm scared to get on a plane
So what will the tympanogram show? Whether or not your ET is functioning properly? When you first had the surgery, were they able to observe that your tubes were completely shut? Just curious, because I'm able to pop my ears, but I don't know why I have the fullness, or the crackling, i am very confused.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Here goes. My TMJ symptoms are pain, all over the joints, even the bottom jaw line, it switches around side to side, ear ringing popping or crackling, which is separate from the clicking, and the clicking is mostly left side, because they describe as permaneent lock, my jaw opens 7mm in AM and by 3 it will get to 18mm max. I do not really feel a pressure in my ears, more in my head, so much who knows, if it is in ears also, my ears do get wooshing noises, they itch like mad from throat to ET, I can itch my ears by sticking finger in and also doing this thing with my throat and feel it all the way through like its connected, and its wonderful...nothing like a itch that you are able to SCRATCH, but thats the only plus side.
My neck as said SCM elongated and hard as rock from under jaw on left side to base of neck, which tilts my head to the right side now the right side of SCM twists back further, plus there is a verticle like swelling on top of the SCM or maybe that is a scalene, but the off balance dizzy ( not light headed ) is horrific, I get more symptomaci with all of it standing STILL, as opposed to continuous walking, oddly enough.
I had my tonsils out over 24 years ago, I am 47 and have severe problems in last 3 years, my whole spine feels stiff and so do my legs. Laying down is worse for me as far as neck and jaw pain, and ear ringing, which changes pitch a lot, from loud to a lower buzz like a flourecant light.
I no longer can work and I used to work 2 jobs at once for 10 years, now if there was a job like Forest GUMP when I just kept walking , ( except for my hip and leg and back stifness that would be best for my dizzy issues, I am a mess, I HATE this, its not living at all, I rarely leave my house, it is all that bad!
I search for anyone with my same symptoms looking for some miracle cure others like me may have found, I am sorry to hear about you too, what can any of us do!
The following 2 users give hugs of support to: Here4u2 JenPlus2 (05-09-2013), TL81 (05-09-2013)
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
mh214-so weird that they diagnosed you with PET, on what basis? You are right in that the main symptom of that is autophony. It's kind of a strange diagnosis....
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
TL81 yeah i thought it was a weird diagnoses to. He basically said since i had positive and not negative ear pressure that my e tubes were functioning normally not really sold on his diagnosis but he's one of the top otologists in Dallas so he should know. I too am like you, i feel tremendous pressure when im in my car driving all the time it's horribl. How long have you been feeling this way and what do you think brought it on?
but yes, I'll keep Dr. Weeks in my back pocket 
. I'm off today thankfully because I start to look a little silly sitting there all day at work popping my ears. I'm sure people are starting to think I'm wacko and/ or trying to take up scuba diving. What helps you girls when you're ears are getting more annoying than you can handle? Well, besides ear popping because I can do it like a scuba diver, but it doesn't relieve the pressure sensation. 
