I am doing well (knock wood) with anti-virals. But recently I have read a couple of posts from different individuals that are truly suffering and having this disease take away their life bit by bit. In one case I read that the dr wanted to try something else "first" and have also read a while back where a dr responded to surgery request of "you are not there yet". So with the hope of helping others that may be ready to get "destructive" surgery (but honestly I can't imagine anything more destructive than this disease itself) wanted to post this and ask that those successful with getting the surgery - what did you do to get your dr to agree? Any special recommendations? Best word choices?
I had suffered for many months and tried everything I could in an effort to stop the monster . I visited two of the best menieres doctors in the US , Dr Douglas Greene Jacksonville Fla and Dr Douglas Mattox Emory Atlanta Ga . Both these doctors advised me to have the VNS but my hearing got much worse due to the disease and gent injections so the Laby which is the gold standard was my best option . In the last stages of my fight I also started having drop attacks which closed the deal for me The Laby Was On no matter what . These two doctors both wanted me to stop the suffering from the beginning by having one of the surgeries . They both said the Laby was the best way to solve my problem but the vns was a option if I had near normal hearing , keeping in mind that most likely the hearing would worsen in time . If you have suffered greatly and tried some of the less invasive treatments for at least 12 months find a good otoneurologist and tell you want the gold standard { laby } so you can stop this monster and get your life back . Now a word about going bilateral . I know people that have developed the disease in the other ear and the fact is they live a good life because according to both my doctors for some reason the disease is usually not as severe in the other ear . I am also aware of some of dr mattox patients that have had a double vns which stopped the terrible vertigo . It did take 18 to 24 months for their bodies to compensate the loss of the vestibular nerves . These people live a manageable life without vertigo . So dont be afraid to move forward and attack this monster with the Laby . Tell your neuro what you want and dont take no for an answer . Good Luck Larry PS The Laby gave me my life back
Like Larry above I too am a patient of Dr. Mattox at Emory, my experience was as follows. Me/Joe: Dr. Mattox? Dr. Mattox: Yes Joe Me/Joe: this is no longer a patient to Dr. Relationship!! I am your 22 year old son coming to you telling you I have mm and want my life back, I can't live like this, what do I do Dad? Dr. Mattox: Son, take it out and get on with life!! Me/Joe: give me the papers to sign.
I had mm for about 10 years before it really started to ruin my life. I thought there was no way I would ever have to have surgery. Then the monster grabbed me and violently through me to the ground tearing my rotator cuff. I new that this was not a vertigo attack but the start of drop attacks. I live an hour from Boston so I contacted Dr. Stephen Roach one of the best OTO in the area located at Mass Eye and Ear Infirmary. My appointment with him went very well. He is a straight shooter no frills attached. He started to list my alternatives to surgery but because my hearing was destroyed he recommended the laby. He listed all the things I should not be doing due to drop attacks...no driving, no biking, no climbing etc. This is not the way I live!! Thanks to people like Larry and Joe I went with the laby. Their encouragement along with their success helped me make my decision. It has been over 3 years and I don't regret my decision. My life returned to normal and I will forever be grateful for this website and the experience of the members. As we all say "the laby gave me my life back."
I suffered with Meniere's symptoms for about two years. Year two, things got significantly worse. I started seeing a neurotologist at UC Davis. He initially was reluctant to discuss (in his words), "nerve cutting". But it didn't take me long to convince him. It was simple - I told him that if I continue on this path, I will lose my job, income, and ultimately my career. With little further discussion, he said ok. I was originally thinking VNS, but the last 6 months I lost so much hearing in my diseased ear that I went laby. Best decision I ever made.