Bulldogs, you're absolutely right -- Don't let Menieres run your life! For years it was controlling what I could eat, where I could meet friends, whether I could leave the house or drive a car, what had to be in my rescue kit, and fears of what the next hour/day/week might bring. After labyrinthectomy surgery, I am running my own life once again, and it feels great. At some point, destructive treatments are all doctors can offer to stop the vertigo. How do you know when it's time to seriously consider taking that step? I've reflected on this question over the past few months, trying to distill the key factors that drove me to reclaim my life. Here's my list: You have no doubt about unilateral Meniere's diagnosis. You've tried the standard protocols for managing the disease, but vertigo phases still flare up. Your hearing/word recognition has dropped to a barely useable level -- severe/profound. Your vestibular system tests show decline of function, indicating brain is adapting for balance loss. You are having vertigo flares with multiple spinning episodes a week. You find yourself isolating socially because it's just too hard to make plans or meet people. You've lost pleasure in life because of the constant, inescapable anxiety. Be well in 2019!
Great post. Right now I am facing the fact that my good ear is going South. I will not put my life on hold because of it. I will do what needs to be done if I start with vertigo. I already gave up 4 years of my life to vertigo and 12 years to the disease. As my OTO assured me when I had my laby ..."you will not have to live a life of silence." I see him Friday morning to discuss my situation going forward. Great picture Joe!
Justin, I am not sure those same options are not available for bilateral mm patients. I would see a top notch OtO...at a large teaching hospital. There are lots of people on this forum who have had both ears destroyed and use Cochlear Implants to hear that have dam good lives. They work, travel socialize, watch their kids and grandkids play sports ect.....Hang in there my friend. I would recommend calling Dr. Rauch at MEEI....he on
Unfortunately I don't live in America and I'm not sure the specialists here are on par with yours. But it's good to read that there's always hope.
Hey Red, please do keep us posted....like you i will never go back to vertigo, to me its just not a life, i know with no vestibular function in either ear it may not be a perfect life and i may need a cane or at times use a mobility device as i get older, but i can still travel, make that road trip out west with the family, go on a cruise with my wife, take a boat ride, go sit on the beach and watch my kids play sports and grow up. For those interested on the acoustic neuroma forum (people who have had double vns' and double laby's) they have many many people that will communicate with you and offer great advice. it is a forum just like this. I know a lady over there Clarice/CDH3 is over 70 years old and she has destroyed both ears because of tumors and she is the best. She goes to Disney, On cruises and has many grandkids and lives a normal life. I would not hesitate to reach out to her. Also on this forum, AKJIM has had both ears destroyed and has 2 CI's and he is a radiologist and constantly travels. He is another great rescource as well as many others. We are ALL gonna make it.
Another +1 to what Bulldogs said. Enjoy Breck, bulldogs, that’s not all that far from home for me. Right now, just over 6 months post labyrinthectomy, I am on a cruise ship enjoying the warm waters of the Caribbean. A ship! Like with constant movement! And I’m not bothered a bit. I’ve been on excursions and played with sting rays with my family and jumped from boat to tender to boat and all is well. I could have never done this a year ago. Laby may not be the universal answer but there is ALWAYS a way past the hell that is Meniere’s. You will be better. One way or another. I have worries too about my good ear - it’s doing weird things lately - but I can’t let it get me down. Happy new year everyone
Great photo! And you are right, we must not give up. There is a solution out there for everyone. All we need to do is to persevere in looking for the right answer.
Thanks you guys. My biggest fear was that I might someday be desperate enough for surgery, and thinking that would mean deafness, and just a lot fear of the unknown. Knowledge is power, and you guys are helping me see that I have options, even if they are still scary.