So I haven't been on this board for a while. I have been fortunate that my major vertigo attacks have decreased significantly over the past 5 years. I haven't really been worrying about following up with my ENT about my Meniere's because well - the answer was always "I don't have anything for you; nothing we can do". BUT couple of years ago I started having some intermittant hearing issues with the other ear. Insurance copays for specialist on my plan were so high after being kicked to 3 different dr with similar initials after their name supposedly ear specialist I just stopped pushing it. Fast forward, new job a few months ago and decided to make an appt at a dr that specializes in both eustacian tube disorders (what I was told was the issue with the right but no plan to treat/fix...since my case is "complicated" with Meniere's) and Cochlear Implants as my hearing in M ear is -100. During my appt the dr immediately asked if they had ruled out autoimmune cause of Meniere's or tried treating the M with autoimmune drugs. I said that it was the first I had ever heard of that connection. Obviously since I have pretty much just accepted the horrible issue of Meniere's I was not aware that this could be a "thing"? At this point with the damage done to the effected ear that is pretty much lost. Is this new info that doctors are now using to treat new patient diagnosis? Just throwing it out there as it was new to me and if I had been given this info 10 yrs ago I would have been doing everything to try to treat and see if MY issue could be addressed! (For the record, in 2013 I was successful in getting started on valycylovir program; the load dose was extended by 4 weeks before tapering. It not only helped - for me - vertigo attacks, as important it got rid of the constant pressure in my head, the ongoing fatigue, and the major ringing. Those 3 for me were almost the worst because the actual attack I know I will get through and come out the other side; but the 24/7 impact of pressure/ringing/fatigue was a LOT.)
No..not yet. First she prescribed 2 week high dose prednisone (more for the sporadic issues I am having with the other non/Meniere's ear that comes/goes). If the steroids help she believes it will help confirm auto immune but likely would want further testing referring to a rheumotologist for confirmation. Was just interesting that she mentioned it could have been the cause of my Meniere's and would it have potentially saved my hearing at least in that ear if I had been on auto immune drugs? We will never know. She ordered a ct as well - mainly I think to check cochear potential (I can't have a MRI). Her viewpoint is that with the "good" ear being impacted and hearing dropped consistently over the past 2 years that if I am a candidate for cochlear she recommended getting the Meniere's bad ear treated to get hearing restarted so I would not be in a position where I wouldn't hear from both. It's a lot. But I truly was shocked at the auto immune reference. I stopped really following up/going to ENT about my Meniere's because I kept being told there was nothing they could do. And since the vertigo attacks had lessened (of course not before the major destruction to my hearing first) I didn't really need the specialist.
Update - they did the short/high dose of oral steroids. Didn't impact my hearing a lot BUT I compared the tymponetry done in Aug vs one today and in that ear that I thought (and prior spec thought) was ETD the pressure results went back to normal. Dr is offering to start me back on dieurtic pills (stopped them early on in my Meniere's as they didn't really have an impact); or said we could try steroid injection in the ear. She said it is a course of 3. On that...I have heard from some that the injection isn't horrible; but others have said they wouldn't wish it on their worst enemy. LOL So not sure about that. ONE finding from the CT was a lot of inflammation from sinus infection (I have had previously but honestly doesn't feel as bad as when I have gotten before). So starting on antibiotics for that; and some nasal antibiotic ointment (never heard of that), prescription nasal spray etc. Goal hopefully is to clear that up/out. With that...thoughts of everyone...should I do everything on the sinus piece and then determine if I move forward with the ear injections? or just move forward and get err done?