I had an appt with my ENT today. I got a Decadron injection - I had gone just about 60 days without an episode but did have one a few days ago- it was much less severe and the time in-between them is stretching out. However what I wanted to tell you all was that I gave him all the AV info that I found here and printed it all out and he was VERY receptive to it and thanked me for it. ( JoH O also gave him your regiment) -- I am going to continue with the Meniette's device and the protocol I am on right now as I feel really good.... But he has patients that nothing has worked for thus far and said he will absolutely start talking to them about the AV regiment. I never would have known about that if not for you all so thank you. I hope that Meniere's patients in CT now have a new Dr to go to who is willing to embrace this.
Why can't all doctors behave that way? Most of the ones who treat this disease seem like they want it to remain idiopathic and don't want to listen to or read research that indicates possible causes. Good for you.
Good question, as to the reluctance of many or most doctors to embrace new treatment and causation evidence. It seems so obvious to us, knowing what we now know, and have the documentation for such, that doctors just ought to willingly and gleefully take on all the info stuff we have. Their reluctance seems so brutal. But, in fact, there are some really important factors in play, things we need to understand --- and try to work around when we present our new info to the good docs. As mentioned before, there is a natural reluctance to "learn new medicine" from walk-in blokes off the street; us. We have no medical credentials, just hopes and desires (and some legitimate info --- if it would be read and considered). Our stuff has to be pretty good, and well-presented, both verbally and in print form, to be read and considered. Fortunately, we can present a re-print of Gacek's professional paper. But physcians seldom have excess, spare time to read such stuff, particularly when a patient is sitting there, with others in the waiting room. The good doc has to work from what he knows. He can't be using valuable office practice time reading and considering multi-page technical articles. Of course, that's why in my Database posting on this (http://menieres.org/talk/index.php?topic=557.0) I admonish people to get the printed info to the physician a week or more before the actual appointment, to allow the doctor to read over the material when he has the free time to do so. The considerations are significant, and must be understood. One of the greatest threats to a doctor's practice is the filing of a malpractice lawsuit against him. At med school, and at frequent post-grad seminars doctors spend hours at meetings listening to medical practice insurance company lawyers lecture on how client doctors can and should avoid medical malpractice lawsuits. One of the first admonitions from the lawyers to the docs is, "Never, ever, do anything weird or unrecognized to your patients, no matter how much they beg for such. Stay with standard, accepted practice, and no plaintiff's lawyer will have grounds upon which to file a lawsuit." Well, claiming that Meniere's is not idiopathic, that it's actually in most cases caused by an inner ear herpes infection that can be successfully treated with antiherpetic drugs is just not standard or accepted practice. If taken to court, you won't be able to find any of that in any medical textbook. Too far off the edge. Stay away from stuff like that, the doctors are told. With all of that, many, even most, modern American physicians are simply going to reject the antiviral treatment approaches. Taking that on brings unknown lawsuit risks, as none of the stuff is yet in any medical textbook that could be presented as evidence in a trial. Fortunately, we have a few reputable articles, such as those from Dr. Gacek. Those are, indeed, valid, and increasing numbers of physicians are stepping outside of legal protection boxes and actually prescribing acyclovir, et al. Let's just hope this continues at an increasing pace --- so that soon enough an otolaryngological textbook finally lists antiherpetic Meniere's therapy as valid. Until then, we must be as gentle and persuasive as we can be. But sometimes, it means we have to seek a new, more open physician. --John of Ohio
Excellent points John.... I am just super happy that my Dr was willing to take the time to read and research and is not afraid to use AV's with other patients who have not responded to all the other traditional treatments so far ( such as the woman that I got my Meniette's device from) -- It's working for me - It didn't work for her..... so he is willing to do this research and then bring her in and talk to her about it - and since she is still having two or more episodes a week my guess is she will be all for trying it.
I think the real success would be if that doctor was open to prescribing at the beginning vs when everything else fails. The longer the disease is active and causes damage the reduced efficacy of the a/v - as per the most recent study that Vicki posted.