1. 40 years old 2. 3 years 3. 50% 4. 7 between vertigo/dizziness and feeling like shit 5. Shunt, 3 Gent shots and 3 streptomycin shots (stronger than gent) 6. No symptoms in good ear ( it would not have made a difference...i wanted to be done with mm ) 7. 3 weeks after surgery I was driving 80 down the highway in my convertible and mm was home. 8. No... it’s fair happens it happens and I will get another laby with. Cochlear implant like by friend Sid on this forum. 9. I do what I want and eat whatever I want...although I try to be healthy just because junk food in general is not good for you and cancer/heart disease Ect....as we age 10. No... I hear better after the laby because all that hypercusis and full feeling is gone for me. I am just deaf in my rt ear with a little low grade tinnitus. 11. I would not let mm control my life. The laby is the gold standard for getting your life back..no more mm, no more anxiety about attacks ect... If I went bilateral I would get another one and use a cochlear implant to hear. Life with vertigo is no life..I have 3 boys ages 9-14 and I’ll be dam if I m not going to go to their games, vacations, ect.... The only difference between me another 49 year old man is I am dead in my rt ear. I surf, Coach little league, fish, snow and water ski ect.... Joe/Bulldogs
May I add a question to item 3: How bad was your vestibular nerve (VNG etc testing) before your surgery? (I’m wondering if, and assuming that, the vestibular/balance recovery post-laby is easier if your vestibular nerve is already more severely affected.)
1-27 I am now 65 2-3 years 3- Lost hearing via a failed shunt attempt 4- 2 to 3 violent attacks then locked into intractable non stop spin 5- Cody tact and shunt 6- other ear was good at the time 7 one week. Other ear compensated immediately 8 went bilateral and 5 years after laby 9. Now that dizzy balance issues have subsided (burnt out if you believe in that). God, I eat everything....pizza, beer, got some catching up to do 10 laby L side cant implant and unaidable. R side cochlear implant. I’m back man. 11no regrets on laby being deaf one side is nothing that will slow you down. And you cant have an attack if there is no vestibular misinformation going to the brain. it is a sure fix. Maybe should have done my implant sooner. But was having a lot of spells wanted those to stop first. But now will have a longer rehab on CI since I was deaf for 17 years in that ear. Meaning I was deaf totally for those 17. But during that time technology increased dramatically. So having the advantage of that now.
Hi Joe, I am inspired by your story, have md for 1 year only going through hell now with attacks every day, like you was 39 with a toddler, trying different things but I can’t give up my life to this, I won’t delay too much before I get serious, just a question though, you say if it goes bilateral you would get another laby, how does that work with balance lost? How would you cope with this side of things?
Hello, The good lord blessed us with three balance systems (ears.eyes and propreoception/muscles). We only need 2 working to get on with a good life. The truth of the matter is life with vertigo is no life in my opinion. I cannot be afraid to leave my house and go watch my kids play sports, life on the floor or with your head in a toilet barfing is no life I would rather be dead. If I ended up using a cane or another assistive device so be it. I am going to be a part of my kids life and enjoy life. I can enjoy life using a walking stick or cane. Vertigo is my game changer. The brain will adapt and you will get on just fine without your vestibular function....There are many on this forum who have zero balance function and live great fulfilling lives and do not resort to using a cane or anything else. They travel. They bowl, they shoot hoops, they are active....and every one of them will tell you it is so much better than vertigo. I will not live with my head in a bucket barfing when there is an option to end it and enjoy life.
Hey Joe, Did the laby free you of all symptoms, ie brain fog, dizziness, fullness, I guess it does because it destroys the vestibular system! You seem to be very active and adapting with one functional side, I guess it's possible that there could be vestibular implants in the near future to deal with bilateral if this is the case. Did you have days where you thought that you would have an attack, eg tinnitus build up, then extreme fullness but didn't get the actual vertigo? Sometimes I have days like this which I still consider an attack because after this it takes about 3 hours to come right, I cant function at work and I work in finance so it's a impacting my job every day. Other times I have an attack. I am trying Gent injections first. Did the laby free you of all symptoms, ie brain fog, dizziness, fullness, I guess it does because it destroys the vestibular system! How long after the Laby were you back at work? You seem to be very active and adapting with one functional side, I guess it's possible that there could be vestibular implants in the near future to deal with bilateral if this is the case. Did you have days where you thought that you would have an attack, eg tinnitus build up, then extreme fullness then deafness but didn't get the actual vertigo? Sometimes I have days like this which I still consider an attack because after this it takes about 3 hours to come right, I can’t function at work and I work in finance so it's a impacting my job every day, I can’t actually lose my job because then I lose my house, life etc.... I am going to try Gent injections first, have done steroids, antivirals, low salt etc, nothing is working, in fact it's getting worse. I actually just can’t wait for years to try new things. I don't think my actual vertigo is as bad as yours but I am having attacks every day that puts me out for half a day every day, I can’t continue on like this. Gent didn’t work for you but it seems to have a good success rate, have you noticed many people are treated with low dose injections? I am full of admiration that you are active user of this board but have had your laby and feel better, I find this amazing. Thanks again for your support.
Angela, I am as normal as any other 49 year old man walking this earth except I am deaf in my rt ear from the laby. With the laby you have none of those symptoms except at night I can notice a low grade tinnitus when falling asleep. You will never spin or get dizzy ever again with the laby. I wish I never heard the word gentamicin...I had 6 shots and still felt like shit. No vertigo or anything just felt awful. The laby is the cure to menieres. The laby is basically a 2 hour outpatient surgery. I feel like a normal person after the laby.
Hey Clare I feel like I know you because I have been reading a lots on this forum, how are you going since yr laby? Are you back to work or normal activities? If I go ahead in the future I will also get a ci implant, it seems to be standard where I am. Do you have an aid? How is yr other ear? Any regrets? I have only been suffering for a year but the last month I have had daily attacks, I am on low salt, antivirals, had steroids, nothing is stopping them, some days they don’t turn into full blown vertigo just build up and then fullness and then deafness and mini spins then I feel like crap for 2 hours then it’s repeated again the next day. I am very stressed st the moment and due to recently loosing my baby at 27 weeks pregnant and of course these symptoms are not helping, don’t think hormones are either! It’s only been 5 weeks since I had to give birth. Problem is that it’s now impacting my job and life as you all know, nice to find this supportive group Best wishes ange
Ange, that's so tough to lose a baby. My heart goes out to you. Working out of my home gave me the flexibility to work around the vertigo attacks, but it was still stressful to be under a deadline that I was unsure I could meet. Then the vertigo attacks became so frequent and disabling that I could not accomplish even the basics of taking care of my home. When the vertigo attacks took over my life, I decided to have the laby along with a bone-anchored hearing implant (BAHA). CI wasn't covered by insurance, so not an option. The first month of recovery was challenging, but it got better each week as I focused on walking daily and doing vestibular exercises. The meniere's brain fog cleared up right away when the constant anxiety disappeared after the surgery. Occasionally I get a momentary sense of imbalance, but it doesn't interfere with life activities. I have absolutely no regrets about the laby; it gave me my life back. At the time of the laby I had already lost all useable hearing (no word recognition left) in the affected ear. My other ear is essentially normal. Being one-sided deaf, I cannot locate where sound is coming from, and that makes it more difficult to follow conversations where there is background noise or other people talking. As I understand, sound location is not such a problem with CI. You are 5 weeks out from the very stressful event of losing your baby and are dealing with feelings of grief. Your flare-up of symptoms came on at about the same time, and stress is known to provoke attacks. Have you considered seeing a grief counselor or therapist to help you process all this? If you have been dealing with symptoms for only a year, I'm guessing your "bad-ear" hearing is probably still pretty good. Having a laby or gent injections would take away that hearing and make a profound change in your life, creating a social barrier at a time when you most need support. Talking with a therapist or counselor can help sort out whether it's meniere's or grief at the root of the problems you are currently experiencing so that you can make a wise decision on how/when to proceed. You have my heartfelt best wishes as you face all that is in front of you.
Angela, I just wanted to let you know I read your post about the loss of your baby and wanted to extend my deepest sympathies. I go to mass everyday at 7:00 and you were at the forefront of my thoughts and prayers. Please don’t give up, my wife had 5 miscarriages and we were devastated each time. Today we are the proud parents of 3 boys (two that were adopted) and one that we had to step in and help my wife’s sister out because of some life decisions..... I would not change anything about my life. It’s perfect and God had a plan for us and he has one for you. ❤️❤️
Thank you so much for your message, it's been very hard, much harder with these symptoms because I feel like I haven't been able to grieve for our loss because I am dealing with daily attacks. We are extremely thankful that we have an amazing and beautiful little 3 year old daughter but it's still been hard. I think perhaps my symptoms have probably taken a turn because of everything that has happened, having said that today has been a good day, one only in about a month! You guys have been through so much, I feel for both of you, sometimes the journey to having a family can be challenging but the rewards when you get there are endless, 3 boys, wow that's a whole tonne of energy needed! Thanks for your thoughts and prayers. Ange
Hi Clare, Sorry I have been meaning to come back to you to thank you for your message, you are very kind and I value your advise, I do think it's strange that MD has come back a week after delivery and do think it could have something to do with stress or hormone imbalance etc. It's been 6 weeks now and I am still having daily attacks, it's very strange because some days they vary in strength, did this happen to you? Sometimes I can work through them but others not but every day they come. I am just concerned because most of the research I do (and I have done ALOT) it seems people don't get these every day, so I am a little concerned why it's been every day for 5 weeks. It's impacting my work now so I am a bit concerned about what I am going to do, I cant keep going like this. Any ideas if this is common and then you could go into remission? I have been to my specialist he is sending me for a balance test and did suggest low dose gent to stop the attacks, I am going to another top specialist for a second opinion in 2 weeks time. Such a hard time for me at the moment! Ange
Hi Ange I’ve had times when the attacks were daily, usually during barometric chaos. There are a lot of fluid shifts, on top of the hormone changes and stress etc. But sometimes it may just be random. It sounds like you’re on track getting some good treatment options.
Ange, my symptoms would flare up in stressful times (like AnneT, barometric pressure also affects me) and that flare period would typically last weeks to a couple of months. During a flare period I would continually feel "off" and might get full spinning, retching vertigo attacks a few days in a row then subside for a week or two, then come again. It was pretty random. In the spring of 2018 it became unrelenting with multiple severe attacks a week, sometimes multiple a day. Each attack would take 2 or 3 days of fatigue and imbalance to recover from. I'm so sorry you have been having daily attacks for 5 weeks -- ugh. Good that you're seeking a second opinion, as there can be many conditions that cause vertigo that have to be ruled out to be sure it's Meniere's. I hope you have had or will be getting an MRI, which can help with the rule-out process. Two weeks is such a long time to wait when vertigo is hitting every day. Hang in there.
