Discussion in 'For Friends & Families of Menierians' started by Janie2010, Apr 8, 2013.
I would like your opinion on the divice. I started using it last Tues.
I have been using the Meniett Device for about 8 yrs now. It has definitely helped me worth the fluid in my ears and thus decreased my episodes of debilitating vertigo, tinnitus and aural fullness. You may not see results for awhile though. I had to use mine for about 6-9 months before I saw a lot of benefit. The only other downside is that I have problems with the tubes in both of my ears getting full of wax or they work themselves out of position. I generally have to either have both or one of my ears cleaned or the tube replaced or re-positioned every 3-4 months. I also had to have larger tubes put in about 1 yr after the first set was put in because I had so many problems with the tubes coming out at first. Don't let this discourage you though. Hang in there! It was well worth it all. My dr says I would not be doing as well as I am right now if it were not for the Meniett. He doesn't do the endolymphatic sac surgery anymore because he has had so much success with the Meniett devices on his Meniere's patients.
The long-term studies found that the Meniett was clinically effective in about 80% of the patients with MD. Natural remission of MD is 80%, as such Meniett is a safe form of placebo that can help reduce mental anguish by letting the user feel he proactively getting better and is on his way to remission.
^^ I am not sure it is the same 80%.
Meniettes require a tube in the ear. For some people, that alone brings some relief. This is a very idiosyncratic disorder no doubt caused by different things in different people. Nothing at all has been proved to 'cure' it. I would work with the doctor on the best options for you. Picking the right doctor, may be the biggest factor in finding releif.
I used the Meniett for 3 years. Insurance did not cover the cost. I believe it was 3,500..but again I am the one who had VNS surgery after trying all these things...Knowing the company and the rep at the time the studies showed then more than a 75% chance vs doing nothing just waiting for an attack. I had my tube replaced every 9 months but used it faithfully 3 times a day...I saw results in a week. It also got me through my pregnancies. But because I was always flying with it or in the car with work it just stopped working and the replacement was 1000...you can buy a "refurbished" one but when I bought it new, It was either all or nothing. Like I said, got me through pregnancies with only 3 attacks throughout and manageable with anti vomit meds and less drowsy Dramamine which were safe for the baby. If you have the money or that frustrated with all the roads you have been down I say yes. There is a money back guarantee.
I also used DIAMOX..it is meant for people climbing super high mountains to where they have to ease their body, lungs, etc to adjusting. For some reason it has proven effective against MM attacks...Set back, your hands would tingle and would have numbness down my legs and toes esp...it is also sedating More than Dramamine....but never had an attack on it and that was over a year. bst of luck, Nicole Orlando FL
"Sirlanc" a regular member stated that 80% of patients with MD will be self cured. I don't know where he/she got that number. I was frustrated reading that because I am in the medical field and close to specialists and others I know with MD....it might SEEM that it is disease that can be self cured..but we ALL know the attacks can go dormant and then come out of no where so I think his posting is off. I can accurately say this only to my story and 2 other friends I have made...
People THINK they are cured..but give it a few months, years, and it will or can re-surface. This is an auto-immune related disease as research all states....so regarding the Meniett..Yes I used it...but in combo with other medications....but it did help esp during pregnancies. When your life is at risk, falling down stairs, etc...I would put the money out again to get the device fixed (I used for 5 years) but my VNS was so successful I take NO meds for MD and happy as can be.
Just remember, everyone has different takes on this disease. I ONLY TAKE the advice on those who have tried those avenues. If they haven't ...how do you know if it works, etc...
Nicole, Orlando FL
Please share with the group where you are getting your "numbers/percentages" from. We will have more respect for you if we have a source.80% for the Meniett is not even the evidence, actually less, 75% OR 70% if you read all the CLINICAL studies and reports. Being in the medical field, please post where you are finding these statistics...not talking about the Meniett but your other postings. I think you are labeled as a "Hero" member. I would just expect more out of you. Have you ever had any surgery? Maybe a VNS? this is what readers want to know....and you can call the company about the Meniett and they will send you their studies. Please help new members and saying 80% (not sure the exact wording you used) but will "recover" is ridiculous. Why would we all be on this site..some for 30 years???? What surgeon/specialist told you those figures? I know you referred to a post/website...but this disease is not like a "one fits all" I just want to say please post positive bandaids that you use, not negative. I have been on this site but not a "hero" status...but from a person who lives in the medical field...your post is in no way positive to new or old members. Feel free to email me, I just want to help others. Nicole, Orlando FL
A proud VNS patient that was walking in 1 week, has a life, hearing is better and fullness has subsided. I know I am only one, but know from my surgeon, I have already helped 2 others in a short term go to my surgeon and living their lives.