Joe- Thanks for your note. If a patient with burnt out Meniere's or post-labyrinthectomy on one side develops Meniere's in the second ear their symptoms are often more intense than the first ear because they have no "spare" ear to help them compensate. However, the treatment algorithm is exactly the same as for the first ear: a trial of diet and lifestyle adjustments, then a trial of diuretics, then a trial of intratympanic steroid injection, then endolymphatic sac surgery (which I do not use on the first ear), then IT gentamicin and, finally, labyrinthectomy if all else fails. And, yes, we can put a cochlear implant in a lybrinthectomized ear. In fact, we can do the labyrinthectomy and cochlear implant in the same operation. There are definitely patients with aggressive bilateral Meniere's who are better off with no inner ear balance organs. -sdr --------------------------------- Steven D. Rauch, MD Professor and Vice Chair for Academic Affairs Dept. of Otology & Laryngology Harvard Medical School Otology Division Chief, Vestibular Division Otolaryngology Dept. Mass. Eye & Ear Infirmary Boston, MA 02114
And not a hint that the symptoms were caused by viruses, or could be controlled by antivirals. Modern evidence strongly supports the viral involvement, of course. --John of Ohio
John, I am only trying to offer help and support to Trisha, she tried your protocol as did I and thousands of others on this forum and not on this forum without relief of symptoms so don't turn this thread into another VMS infomercial. I think your 90% cure rate is a figment of your imagination and somebody who does not understand statistical modeling and abstract differentiation analysis as it pertains to formulas and susceptibility of manipulation. Please let Trisha take comfort in the fact she is in good hands! Regards,
I am a big supporter of a viral cause, but John, even Dr Gacek does not have 100% success rate with antivirals. There is about 10% or maybe more of MM patients that DO NOT respond to antivirals due to the virus mutating or for whatever reason. When Trish or anyone else opts for surgery it is usually because they tried everything else and had enough of this disease wrecking their lives. We should support their decision,which I am sure is given a lot of thought before it was made. Trish from everything I hear and read Dr. Rauch is great and soon you will be getting the life back you knew before this monster of a disease disrupted it. HUGS Trish
Bulldogs - this is a great post to refresh. The part that I like the most is that it hopefully addresses some of the fears that people have about "what if" the Meniere's goes to the other ear. And when people have not experienced it in both ears or are worried about that concern when they are deciding next steps (whether it is surgery, injection, etc..) it is a great reminder. Trisha - so very happy for you. At the end of the day only you can know when "it" is time - and for you that time is this month! Pretty soon you will be going through your days without the wonder of "if" today will be a good day or bad day. You are being treated by a good doctor and you have knowledge/support from people here who have already walked the path you are starting down. Good luck and keep us posted!
JOH - whether or not this particular note mentions anti virals is not really an issue. But even if it was, there are people that a/v do not work for as well as others that are not candidates due to pre-existing issues with kidneys. Further IMO since every person reacts different to this disease and no true common piece is found with all - there are some people that may simply elect not to try a lot of potential options but go direct to the one thing that is for sure, surgery will stop the vertigo. Not saying that it is the right course, nor is it the wrong course - it depends on the person, their life, their tolerence, how active and severe the disease is for them, etc.. To me, your program of supplements is a viable option for people to try; antivirals (if their doctor will prescribe) can be an option; management thru diet works for some; managing triggers helps with some - basically there are a lot of options that can at least provide hope. Surgery option is another piece of that hope - while it is a major decision for some, it still is out "there" for someone in their mind that there is something that could end the vertigo if everything else that they elect to try doesn't work.
Any perception that I was in any way attempting keep anyone from using any Meniere's therapy they choose is incorrect. I merely posted additional therapeutic protocols of demonstrated efficacy. Each will elect to go forward as they choose, of course. Nor have I ever implied that Dr Gacek's, mine, or any other MM therapy is 100 (or even 90) percent effective. Not so. The only useful approach is to set before interested readers of this website all of the treatment protocols that have positive responses, including destructive surgeries, of course. Witholding such information is not appropriate. The database (http://menieres.org/talk/index.php?board=3.0), of course, is one of the best listings of useful treatment protocols on the entire Internet (inclucing some others that have not been mentioned in this thread). --John of Ohio
John your posts in Bulldogs thread are inappropriate and IMO insensitive. This thread was meant to give support and assurance to Trisha who made her decision to have the surgery with Dr Rauch. Trisha is not new to the forums. Anyone on these forums knows about antivirals so info about it is not being withheld. Its plastered all over the forums. If you took the time to read about Trisha and her journey you would have known she tried your regime and had shunt surgery and have tried other treatments as well. Accept the fact that unfortunately for some people lysine, antivirals etc do not help them and we should support their decision for surgery because they so deserve the relief others get with other treatments that have failed them.
Dr Gacek's protocol does not recommend high doses everyday forever. Acyclovir has been the most studied drug and there are several studies that conclude long term safety and efficacy of acyclovir and valcyclovir (5, 10, 20 years). Aids patients take them for the rest of their lives w/o any problem. Most doctors have no problem prescribing antivirals for their AIDS patience long term, so that is not why doctors do not easily prescribe them for Meniere's.
edit: I meant to say: *Acyclovir is the most widely studied and clinically utilized antiviral for the suppression of HSV.
and please don't give out misinformation as if they were facts, that can only hurt someone looking for relief on these forums. The point of Bulldog's thread was to give support to Trisha, not have a debate about antivirals.
lol... Speaking of statistical manipulation... Does this forum have even a thousand members? Much less thousands(plural)? I'd be surprised if it did. I wish Trish all the best, I truly do. If she feels she is done and just wants the laby, I 100% respect that. But I am sincerely glad that someone in this world is actually interested in determining the cause of this damned disease, and has plausible theories and treatment plans that work. Attitudes like yours HURT the advancement of medical science. And attitudes like yours PERVADE the medical establishment. So many old school has-been doctors who are set in their ways and making a comfy 400K a year salary off of destructive medical procedures. You do realize THAT is what you are arguing for, don't you? Maybe I'm just gullible. That was what you accused me of before, right? I must be to assume that the majority of the medical establishment is wrong about this disease. I guess it's a good things that Solari didn't take your word for it when he found relief via Vitamin C, or Vicki via anti-virals, or Santa via anti-virals and OPC, or any of the many others who are out living life free of the symptoms of this disease WITHOUT having cut their ears out of their head. God forbid someone want BOTH. Relief and to keep what God gave them.
Great post Joe! As most of you know Dr. Rauch is my OTO and did my laby 2.5 years ago. He is a straight shooter and is always available via email. I feel very comfortable emailing him with any concerns and he always responds. Trish is in great hands. I am anxious to follow her progress. Thanks again Joe for reminding people on the forum that their is a way out of this dreadful disease. Trish you are on your way!
Trisha, ((((( HUGS ))))) I know you must be very anxious regarding your upcoming surgery. I recall telling you to reach out to Bulldogs as he struggled with other treatments that did not help and finally decided he wanted his life back. The surgery did that for him. If you read back through many of his posta about his activities now as opposed to before the surgery, you will see that he basically lives a normal and active life. He is also enjoying being active in his young children's lives. As many of us with Menieres and children, it is hard to get through the everyday functions, not to mention things such as skiing, surfing, riding amusements, etc. Do not be discouraged by others opinions, we all have them.as others have said, you are in the hands of a well respected surgeon and your surgery will go smoothly. Recovery may make you say, "why did I do this?" But as Bulldogs has told you, push yourself everyday to walk just a bit and then a bit farther and you will recover quickly. I SUPPORT a your decision!! While it may not be right for everyone, I do know after much contemplation and advice from your physician you've made the right decision for you! I'm always here if you need me!
Vikingman The current amount of members at this point is 529. I'm sure the Old Board had many more. Let's not discount the many who are not members but view and follow these boards. It is not manipulative to say a thousand or more, it is a simple fact. This thread was not meant to be an attack against others decisions or forum stats.
Is it manipulative to say that thousands have not been helped by these alternative protocols? Cause that's what BullDogs said and what I was referring to. He seems to find some perverse pleasure taking other people's hope from them if it isn't based on the same decision he made. He literally... point blank called me gullible for believing that an alternative therapy, something other than surgery, has the possibility of ending my suffering. I can't respect that.
I absolutely DO support Trisha. I sincerely hope her recovery is short and fast and that she can have a smile on her face for the rest of her vertigo free days, eating all the salt she freaking wants! lol These life altering decisions are intensely personal, and I would never call into question the decision another has made about how to they are going to treat this disease.