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Old 10-09-2006, 05:33 PM   #9
Senior Veteran
Join Date: May 2005
Posts: 528
joy78 HB User
Wink Re: bilateral vestibulopathy

I'm really sorry you had such bad experiences with ENT's. They don't necessarily know what they are talking about. I thought they did too, but soon came to realize that through my own research and from learning about things from people on this board, that just because they are a doctor doesn't mean they are right. I would stick to what your neurologist said, about you getting better. You said things are slowly getting better, and that is a good sign. Yes, the damage is permanent, BUT your brain learns that it is getting bad signals so it compensates for them, and you will feel better. There absolutely is a light at the end of the tunnel and don't let ENT's who have no idea what they are talking about tell you otherwise. Everyone's road to recovery is different with these things, it depends on the damage done and how fast your brain learns. I think it's important for you to find someone who really knows what they are talking about, an expert in the field. See a neuro-otologist (not neurologist). You need the right information to get you through this, not some stupid ENT who has no idea what they are talking about.

I also want you to know because compensation is your brain learning, there can be setbacks. You can feel better and then feel not so hot, and then feel better again. I'm not saying this to bum you out, I'm telling you this because lots of people see improvements and then feel crappy again for a little while which can cause a state of panic that the symptoms are worse again. I went through it, and lots of people on this board went through it. Your brain is learning and because of that it will slip up, I kind of think of it like when you are learning something new, you can have gains but then mess up until you get more practice at it. Same goes for compensation.

Try to find the support from well qualified doctors, who can give you hope and not tell you that things will not get better so why try. That isn't true and those kinds of doctors **** me off. Sorry for the rambling, but I think you and the rest of us who have to deal with inner ear problems have enough on our plate and don't need unsympathetic doctors making things worse for us.
Good luck and use these boards, they are great support system and have gotten me through the roughest of times with this inner ear stuff.

Take care!