Hi Dan, under the thread I started about my doctor wanting to do a VNS you posted a couple of times... (thank you by the way)... I was wondering when you had your surgery if you were bi-lateral at the time or had any idea that you had problems in both ears at all. I am not bi-lateral and as I said my doctor checked my "good" ear and said it is functioning and will be able to take over for the other side. I know your VNS wasn't as successful as one would hope and i'm sure it is because you are bi-lateral but that was my question... did u become bi-lateral after? I can't imagine what you have been thru... being bi-lateral... and I can only thank you for coming on here and sharing all of your experience and advice with this. Thanks again, GinaMc
Gina Yes I was Bilateral before I had the VNS. They were hoping that my left ear still had enough power left to handle the balance input from the surgery. I quess it didn't happen. I am actually seeing my ENT today and going to discus what is the next step if any. I can't keep on living this way, something has to be done. I have taken steps backwards actually years. I feel like I did when I was first dx with MM. Valium helps but that is only a stop gap. I really want him to put me in hospital for a few days and run a valium drip to get that nerve to calm down. I can't seem to manage it on my own. I am pretty good first thing in the morning and by noon, I am done for the day....couch time! Last nite I went to bed at 7pm just exhausted. Will keep you updated. Danny
Dan, I am so sorry to hear how you are suffering... again... the fact that you come on here and offer so much support to so many when you yourself can't get any help is amazing. you truly are a wonderful person and I will keep you in my prayers that something can be done to help you. The fact that you were willing to take the risk and have the VNS done knowing you were bi-lateral only shows the desperation we will go to to get this taken care of. I should be more optimistic because my good ear is showing that it should be capable of taking over for the bad... but yet... i still feel petrified that if it doesn't then i will live a life i can't even think about. my doctor seems more than confident that it will be fine.. and i do trust him... he isn't even completely convinced that i have MM so the chance of going bi-lateral wasn't an option in his eyes. but i still have that little pit in my stomach of complete FEAR. Tuck.. you hang in there and know that you are not alone and you are tough and keep praying... you have given so much to others and it's your turn. Good luck with your visit today and please keep in touch as I will be thinking about you. Take care GinaMc
Tuck, good luck and please let us know what your doctor says. You have been much in my thoughts. Lisa
Hi Tuck! I read your posts always. You've tried so much and help others so much. I want to ask you if you take valium "as needed" or on regular basis daily, on a schedule? I found when i was having severe attacks 2 or 3 a day...i'd take the valium and they'd go away. But it would happen in morning, then move to afternoon, then early eve....a cycle. So i tried taking valium on a schedule, once in morning, 15mgs or 10mgs and 5mg at night or 10mg at night, either way, 20mgs a day. My neuro suggested from 2-4 5mg a day. I've been doing really well since i've changed it to a scheduled dosage. He also said if i got SO bad he would admit to hospital for the valium drip to adjust. But i've been MUCH better. I've added in some alternative things also, acupuncture and massage therapy. It took me long time to come back after this episode, it started in January and just this month i've been spin free! Just a thought for you! ps...i take valium, not diazapam. I found a generic does not do it for me at all! But, we all different, again...just a thought for you. Mya (aka PamelaJean)
I'm sorry Tucker. Hope the doctors can do something for you. I will keep you and all of you on this board and my Daughter who has MM in my prayers.
<<Hugs>> to you Dan - you're a wonderful person and have helped so many people. I hope your doctor will come up with something to really help you. You're in our thoughts...please let us know how it goes. Amethyst
Danny, just wondering how you are doing? have you seen your Doctor yet? and if so.. what did he say? GinaMc
