This past Friday I saw a leading researcher on the eustachian tube balloon dialation procedure and he told me I was not a canditate for the treatment. I'm bummed. I do not have fluid in my ears. I have a type A tympanometry. He told me that my deviated septum should be fixed and that I still have my adenoids, which I should continue to shrink with steriod sprays. He said my case is very rare and there is nothing surgically that can be done.
I had my physical therapist who has some experience in ear issues evaluate me and she found a lot wrong with my jaw joints and pressed certain areas and it was quite painful. I am now exploring TMJ as my culprit. I wanted to know if anyone has had any successes or warnings?
I have severe sensitivity to pressure changes. I can't ascend buildings, take the subway, deal with weather changes without my ears acting up. I have crackiling noises in my ear as well, but only when they are clear. Am I really so rare? I know my pressure sensitivies are extreme in comparison to alot of what I've heard.
Sorry about the balloon dilation assessment. Who was the researcher? Poe? Catalano? I'm about to try that (hopefully) with a guy in NYC. Your situation does sound unusual for ETD diagnosis, but the TMJ potential sounds familiar to me (I have pretty serious crossbite, but no ENT has ever suggested that's the reason why). I definitely have fluid, and, based on my fifteen years of dealing with it daily and trying every other solution, it does seem like a tiny exit hole is the problem, so I'm really crossing my fingers on the dilation.
Did they verify that the adenoids are interfering with some kind of xray or MRI or other visual test? The steroid sprays were useless for me (I'm guessing if there's something impinging on the tubes it's more solid, like jawbone). The fact that you're having pressure issues makes me think you might benefit from the tympanic tubes. Have you tried those? No use for me (in fact, I had serious problems with them ... one popped out (or in) in a few days, the other stayed in for 16 months, got my eardrum infected, and had to be removed with silent prayers for the infected hole to close, which fortunately it did). They're designed to relieve upper tube pressure. I have no problem Val Salva-ing pressure relief (I'm assuming you are aware of that maneuver ... blasting air into the tube by holding the nose close while you push air out through your nose). The crackling sounds like some kind of fluid, or at least tightly-pressed tubes letting bubbles of air through a lubricated section).
If you do learn something about TMJ, please share the knowledge. One dentist (a pretty smart one) suggested pulling wisdom teeth, but every other dentist, including the surgeon who was supposed to pull them, said they couldn't imagine how it would make a difference. I respect their reasoning, but I will say that, when the tubes get really bad, pain-wise, due to too much material and pressure, the pain radiates into the jaw and teeth, from both sides, so ... who knows? Maybe a nerve or vessel is getting impinged by wisdom roots, or maybe the TMJ. Any relief is welcome, so if the dilation doesn't work, the jaw is pretty much all that's left for me to explore. In my dreams, some ENT puts dye in my tubes and scans/x-rays them to get a complete picture of where the tight areas are and why, but I've never gotten one to do it.
If you Google semi cirular canal dehiscence syndrome, do you have any of the symptoms? Also have a read of dizziness and balance .com (I have spread the name of the website out because mediators have removed previous posts where I have sited websites.)
Thanks for you reply. I am also in NYC, who are you seeing? I saw Dr. Anand Vijay who was recommended to me by Dr. Poe's office when I tried to make an appointment with him. Apparently there is some red tape to see him. Dr. Vijay has published on the balloon dialition procedure and he refered to himself as a leading reasearcher. He looked at my tubes and throat with a flexible scope and saw the adenoids. He said I have classic eustachian tube dysfunction, but says that the balloon dialition would cause patulous eustachian tube in my case. It sounds like in your case it could be helpful.
It sounds like you had an awful time with the ear tubes. I suspect that it wouldn't help me either. I can't perform the valsalva method very well. I bought an Otovent and it really made my ear do something wonky that took a while to recover from. Apparently my ear drum is moving fine with air squeezed into it. I get the same crackling noises that you described. Despite this, my ears get very clogged and uncomfortable just trying to go outside sometimes. I've had to map my routes very very carefully when traveling outside of NYC to be sure I avoid too much elevation.
I have an appointment with Dr. Michael Gelb on Thursday to get evalutated for TMJ. His reviews are a mix of bad and good, so I'm going with a touch of skepticism. I'll report back.
I agree, I wish a doctor would look for all potentional causes. I'm left with TMJ right now as my only "hope". It's quite disabliing. I have to find a job in NYC that doesn't have me going above the 4th floor if I want to stay here!
It could be that, I would have to convince one of the ENTs to take an interest in exploring it further. I'll see what I can do. Maybe if I bribe them and bake them cookies they'll throw me a ct scan.
Have you been evaluated in this arena? Thanks for the suggested reference. It's helpful.
It's all harsh, but you sound like you're dealing with some nasty constraints. I don't go on flights, anymore, but not because of my ears (I have other issues).
I am going to see this guy on Monday, and I will report back on the results, but, for now, since the MIGHTY U.S. EMPIRE has seen fit to keep this unapproved, still, I will leave out his name, in case. I think I have heard of Anand Vijay somewhere along the line. It's great that you've been in touch with Poe to get recommendations.
No but I work with an ENT who diagnoses and treats this disorder. I am an audiologist and saw someone who complained of very specific symptoms that were obviously semi circular canal dehiscence (SCCD), and even his very qualified ENT did not pick it. Sometimes you have to keep researching yourself, to find answers. This poor client felt dizzy with pressure change. They could hear their steps loudly in their head. Some people hear their eyeballs move, knees creaking in their ears etc. They couldn't go up in lifts to attend University lectures. It can be so debilitating. Please let me know if you get a diagnosis!!! Thinking of you!!! x
That's really interesting. I can't take elevators at all, I take the stairs and rarely venture above the 6th floor these days. I haven't found others with quite this severvity, for curious. I get dizzy sometimes and feelings of brain fog, especially trying to do elevations. I'll get examined for this. I think doctors just don't believe me that it's this severe or they'd rather not know because they can't do much. Thank you for your insight!
Mid-process report. I went to see a Dr. Yosef Krespi at the Head & Neck Institute on 59th St. He told me that balloon dilation was intended for mid-tube expansion, not the exit, which made me think "patulous" like you heard. Then he took pics of both tube exits, we could see that it was closed by inflammation, and even that the adenoids were slightly inflamed, as well. He recommended laser surgery, and theoretically I am going tomorrow for it. However, I have had my nagging doubts, as the conversation went very quickly, and I just came across a video which shows balloon dilation doing exactly what I was hoping it would do, so I have put in a call and am waiting to talk to him before I do the laser, which I am thinking I will cancel, because I have never heard anyone talk about doing it, and I don't know if it has the potential risk of making it worse, long-term, which might put me over the edge. He also didn't sound too confident, although he seemed very smart, was really easy to talk to, theoretically, and had a great staff/office. I am waiting to talk to him, right now. Will update.
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This article is very encouraging, and I personally spoke with Peter Catalano back when this all started.
"A study of 100 Eustachian tube dilations with follow-ups over two years showed a 70% success rate and 15% recurrence rate (Otol Neurotol. 2012;33:1549-1552). “Repeat dilation is always effective and can easily be done in the office,” Dr. Catalano reported."
So ... I cancelled the laser surgery until I get more info. I have not gotten any satisfying replies from Dr. Krespi, although he answered promptly. He is sticking by his guns on the non-applicability of balloon dilation, but has yet to answer me with details about the laser approach. If I hear more, I will report back.
I might try Anand Vijay and see if he says the same. Thanks for sharing that info.