Hello Everyone- I am new to this forum, but have been suffering from Meniere's for over 15 years. I have a VNS scheduled for next month and am interested in privately connecting with folks who have also had the surgery done. Please message me directly and I look forward to connecting. Much Appreciated
I hope that you've exhausted all other possibilities (e.g. antivirals) before doing this. If so, then i wish you the best of luck! What made you choose VNS over a labyrinthectomy?
wish i could help, most everyone on this board has opted for the Labyrinthectomy to get their life back. the Laby is a very simple (almost outpatient) ear surgery and very easy recovery, the VNS is brain surgery and a lot tougher recovery. The VNS will do nothing to preserve your hearing or help with any of the other awful symptoms such as fullness, hypercousis, tinnitus, pressure ect...... I am sympathetic to the Laby but i sure do wish you luck and a very speedy recovery. God Bless!!!!
Is that really the case? I've read a lot of posts on the board and see a lot of people going for a lot of different options. Also, I thought the whole point of the VNS was that it preserved hearing.
maybe i should have prefaced that in terms of destructive options, most, not all, but most people on this board opt for the Labyrinthectomy over the Vns for a destructive procedure. Nothing stops the progression of hearing loss for MM.....VNS is brain surgery where they open your brain/cranium and find and cut the balance nerve. It only stops the vertigo. The disease will continue to progress and your hearing will still be affected. In fact many people who have had a VNS will tell you that they still feel like they are having an attack except the vertigo never comes.
It is true that neither laby nor VNS stops the hearing loss, and neither prevents it from spreading to the other ear. Antivirals, however, have been shown to stop, and even reverse hearing loss in some cases. Definitely worth a try before destructive surgery. That is always a last option when all else fails. https://fhs.mcmaster.ca/otolaryngology/documents/recoveryofhearinginMeniresusingantiviraltreatment.pdf
Post op, the key to regaining balance, is to walk as much as possible. Antivirals in some cases do restore hearing loss. More likely if the hearing loss is not long standing, ie many years.
My hearing has reversed. Valcyclovir - 3000. But as you said not everyone gets the same results. Scott has a point.
I have not had either surgery so can't help on that front. The very fact that you have surgery scheduled tells me that YOU have reached your limit and want the vertigo to end. As Bulldogs pointed out it may be worth the conversation with your Dr on the laby - if only for you to understand the difference for you and to make the right decision. I would recommend that you search the board and then pm some of the members that indicated that they had the VNS. There are many members who don't participate actively now - but I would assume would answer a direct message that they received from you. Good luck. What I do remember reading - Walk after surgery. Walk and keep moving your eyes back/forth constantly to help your brain relearn asap. Good luck.
Well the Laby completely gave me my life back in dec 2011 . Read some of my old post for the track that I took . I opted for the Laby because I was tired of suffering with all the symptoms that go along with menieres plus Drop attacks . Dr mattox emory university told me the laby was the gold standard and I would get my life back . He was right ! If you have suffered for 15 years then you are very similar to me , only I did the Laby I was playing competitive golf a few weeks after surgery and in fact I won a tourney today . I hardly notice that I am deaf in the left ear , just some directional things like knowing where a airplane is located . For me the gold standard was the answer . My only regret is that I didnt do it years earlier . I will tell any menieres patient that will listen , Dont let this disease control your life because there is a way out Laby First VNS second . Yes some of the other things may work for some but eventually you have to say enough is enough . Good Luck PM me anytime Larry
Thanks everyone. I appreciate the thoughts and advice. I am definitely having some second thoughts now about a VNS. I haven't tried the gentamicin yet or a Laby. I still have moderate hearing in my affected ear so I am trying to preserve that. The articles on EDB are also very interesting. I live in Orlando, Florida and have a good specialist that I've been going to for years, but would love to get a second opinion. Anyone familiar with other Meniere's specialists in Central Florida? Much appreciated.
the best advice i can give to anybody is to go to teaching hospital and put your care in their hands. they have the resources and the latest on research and access to clinical trials ect..... if there is one in Florida than go, if not, Emory University in Atlanta is second to none and it may well be worth a trip to John Hopkins in Maryland. The best advice i can recommend is go to see the best surgeon you can and often they reside at the top teaching hospitals and universities. My Laby was done by Dr. Douglass Mattox at Emory. Hurricaneone (Larrry) who posted above and i share the same doctor/surgeon and he is top notch. I also recommend Dr. Rauch at MEEI (Harvard) good luck......As Larry (Hurricaneone) said "do not let menieres control your life", you have options to live a normal life!!!
Wow, i wouldn't do surgery until all other options are exhausted, especially if you still have hearing. Your doctor sounds like a tool. You might try the Tampa Bay Hearing Center. They are willing to script antivirals if you decide to try that route.
Here we go again......doctor are tools and idiots and know nothing. Unvelievable Maybe he should call Dr. Gacek......Oh wait he has had his ability to prescribe AV's revoked because of no scientific evidence they work.
Yeah, you're right. Surgery should be the first option. Don't bother trying gentamicin, antivirals or anything else. Just run to the nearest surgeon and chop out that puppy. And don't worry if it spreads to your other ear. You can cut that one out as well! </sarcasm> OP, try everything before doing surgery. Some of the alternatives that have worked for others here actually eliminate all the symptoms, and prevent it from going bilateral. Surgery does neither. When all else fails, then do surgery to eliminate the vertigo and pray that it doesn't go bilateral. I wish you the best.
Scott most of us that finally decided to do the destructive surgery actually did try everything in the book . I myself did everything possible but everytime I would fall back into the menieres hell . So for me I did waist years of my life running after a cure . D r Mattox would not every tell you what to do but he would give you the information so you could decide. He has seen patient after patient go through the same thing and finally get their life back after the Laby or vns . Some people do well with Gent injections but after 10 injects they did not work for me . So everyone has to decide for themselves if they want to chase a cure for years or attempt the gold standard . None of us are getting younger . By the way I rarely post because I am busy getting on with my life . Good Luck and thanks to all the great people on this board that helped me decide my path and get thru this hell called menieres .
Of course. I understand that. And i would do the same. I have repeatedly said on this board that it's a great final option. I have NEVER said that one shouldn't do a laby after exhausting other options. Note that the OP has said that there are several options his doctor never tried. That is all i'm addressing. If, and i know this is a big if, antivirals work, then they are superior to laby because they prevent spread to bilateral and they eliminate many of the non-vertigo symptoms. And in some cases, they restore hearing. It's worth a try before getting surgery. That is all i'm saying.