TMJ treatment?

I saw Dr. Anand Vijay who publishes on the procedure. I had called Dr. Poe's office and that is one of three doctors who they recommended I see. 

The doctor referred to himself as a leading researcher in the procedure during my appointment with him. 

HI Oren1961,

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!

I don't think I put any links in my post, but it's being moderated. I'll retype it later it if doesn't come through.

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.

Once I get his clearance to use his name, I will. And I'll try to ask as many questions as I can think of while I'm there.

Thank you, yes, please report back and I'll do the same!

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.

Emis Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

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."

http://www.enttoday.org/article/new-developments-in-the-management-of-eustachian-tube-dysfunction/2/

https://journalotohns.biomedcentral.com/articles/10.1186/s40463-016-0126-6

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.

I just called Dr. Anand's office, and indeed they DO perform balloon dilation (YIPPEE!!), but not covered. I will probably make an appointment to see him, soon, and hopefully get a more optimistic answer.

Very interesting. Was the laser being offered for the adenoids? How was the procedure going to work? Yup, Dr. Adand does the balloon procedure. Please let me know what he thinks about this laser thing. He told me I could get my adenoids removed, but I it would be painful and may not help at all, so I'm curious if the laser procedure does something else.

I'm still waiting to get definitve explanations about what Krespi thought the lasers could do for the eustachian blocker and the adenoids. Will let you know. It's a drag the moderators deleted the link I put in (I think it was a YT video of the balloon dilation procedure ... they're pretty damn strict). There was some other link I forgot that they didn't include, either. Will have to understand their rules, better, because it's hard to believe those links were dirty.

I think the general idea was that by scoring the surface with lasers, it could shrink the inflamed "knobs" away from the opening, but I haven't seen any data or reference to it, and I'm still waiting for him to answer my semi-detailed questions.

I looked up Dr. Krespi. One reviewer said he tried to get the bang for his buck on the laser - I know many facilities invest in lasers and get paid whenever it's turned on. I have no reason to absolutely suspect this is what is occurring, but it's a possiblitly. I may see him regardless and see if I can get some straight answers and research out of him. I'm not eligible for the balloon dialation procedure and am feeling a bit more desperate since it limits me so much. It is frustrating your having a rough time getting more information from him considering this isn't a procedure often heard of for eustachian tube dysfucntion. I'm thinking about writing Dr. Poe after visiting him and seeing if he'll respond or consult on my case. 

I think the moderators don't allow links of any kind, but we can say names of specialists, so at least that's helpful. I know some people just give a descriptor of what to Google to get around it; it's annoying, but I get it's for spam protection purposes.

I put in links to papers, but YT vids must be a no-no.

You're going to see Poe, or do you mean after visiting Krespi? I would wait until I try to get some clearer answers from him about the lasers. I think he can manage to go a little deeper. If he doesn't, I would be semi-convinced that the reviewer might be onto something. I had a good impression of him, but he moved fast, which adds up to little data. I was a little surprised he seemed put off by my cancellation, given the detailed explanation I offered, with specific questions, but hopefully it was because of timing. I'm going to send another email to him, now.

My guess is that the scars tighten the surface and shrink the overall circumference of the blocking masses. How much, in which direction, and with what long-term expectations/risks, I don't know, but it sounds like a reasonable thing to try. I just needed more answers before I took the plunge, because I pay forever if something goes wrong. He moves on.

I agree, that's not something I could agree to overnight. I meant one of us could see if dr. Poe has any ideas on this procedure.

Getting in touch with Poe and/or Catalano is a final step for me, at this point. I have seen with my own eyes the exact procedure (search YouTube for Eustachian balloon dilation, and there's a very clear, short one that takes you right down the canal to the spot, shows all, and you can see the resulting extension of the exit hole, which is what I think I need). If they/Anand says no to me, too, I'm going to be very confused, because the ambient variables in the video were identical to the shots I saw Krespi take when I went for my initial exam, and the result is exactly what my system craves. And we're talking 15 years of day-in, day-out experience fighting from every possible angle, and 13 years since the last time I cleared them, momentarily. The exit hole is just too small in my case. It may be because those masses are squeezing it shut, so the lasers may "open" the end by shrinking their surfaces, but who knows? They may get more inflamed, rip, bulge, etc. I don't have any more information, yet. I just sent another inquiry (cum apology for cancelling), so we'll see.

Everything I've read suggests the Acclarent AERA is the current tech to go with. An article I linked discusses newer, better tools being conceived, at least, but probably in need of support.

I have deleted the post trying to get round moderation. If you want to exchange links deemd unsuitable then use the Private Message service as stated in a post above. If you try to bypass moderation then your account can be deactivated. 

Regards,

Alan

I looked at how to send messages, so I will use them for links, in future.