Hi everybody, I am going to start work on Monday and am very worried. Don't know if you all remember me. I had alabyrinthectamy and nerve section more than 3 years ago since my dizziness was bad and my hearing in the ear was basically gone, but I continued to have BAD dizziness problems. And I am no closer to finding a cause since the last time I posted. I am planning on going to see another neurotologist in Houston since I have seen both groups here in San Antonio. But in the meantime, I have to go to work because I am out of money (for insurance). I don't know how I will ever make it like this.

Anyways, I have a couple of questions. First of all, my main neurotoligist said that I had the endolymphatic (sp?) hydrops in my good ear, as did the others that work in his group. However, another independent neurot said I did not have the hydrops becase I don't show low frequency hearing loss (I *do* show a lot of high frequency loss however), my hearing has stabalized (they always tell me it is about the same), and I guess my balance tests and ENG don't show anything in my good ear (I've had quite a few of these in the last year). I also do not have any major spinning vertigo and it is not for only a few hours. I have varying types of dizziness/vertigo that can sometimes last for days. However, one thing that both doctors have now said is that it looks like I do have some sort of eustachian problem. Years ago when I was out of town, I had some problems that when I would swallow, my ear would often plug up and I had to swallow many more times before it would go away. I believe that is when my main neurot put ETD in the medical notes (which I now have). Now a few weeks ago, I got a cold or flu and started having the same problem. Also since several days BEFORE the cold symptoms, I have also had problems with normal sounds, such as normal voices, getting distorted and causing discomfort. I have also had clicking, popping, and discomfort when I swallow for the last several years. So while both of the doctors now have said I have ETD, neither has paid much attention to it as a possible cause of my ongoing balance problem. I even asked my current neurot, but he didn't seem to be concerned about it. I also don't see much information about it around on the net, but I do recall seeing a lot of discussion about it on this board. I have also had tinnitus in this good ear as well. Sometimes I will notice some discomfort in the ear, not really a plugged up thing but more like just sensitivity or something, and then at some point it just starts ringing for about 15-90 seconds. It would also sometimes rings for about a second when I would move my head. So my first question is, how likely is it that ETD could be causing my ongoing vertigo/balance problems and should I continue to pursue this?

My second question is also about tinnitus. After I had my labyrinthectamy/nerve section, I came home and I noticed some really bad tinnitus in that ear they performed surgery on. It was really opressive, and I was having trouble even hearing in my other ear. I had my dad call the doc to find out if he knew what was going on. I don't remember exactly what he said, but I think he said something like something was still plugged up from the surgery. Then I noticed that the tinnitus went away as soon as I turned off my fan or plugged up my good ear. It was as if sound in my good ear created bad tinnitus in my bad ear. This was the first I had ever experienced this, but since I have had this reoccur from time to time. So I am wondering if this is a normal thing for people that have had the surgery I have had and if this is significant in any way.

Thanks,
Cory

Hey,

Check out on the internet about a condition called hyperacusis. It sounds like the symptoms you are having with the tinnitus could be that.

Good luck,

D

You're right, my symptoms do sound similar to the hyperacusis thing. One thing though is that sounds do not appear to be louder, they just irritate my ear a lot. And also it seems that the sounds that irritate it also make me feel dizzy a lot too. But sometimes it has gotten bad enough that I just have had to turn off the tv and also avoid talking too loudly myself. I know that before I had the surgery in my other ear, I would have the same sort of problem when they would give me the audiology exams in that ear. They would keep raising the volume on the tones and words and it would start to hurt and make me VERY dizzy.

I think I will have to make an appointment to go see my current neurotologist here in town, despite the fact that I've already seen him twice in the last month or so. I'll just have to really press him on this issue since it hasn't gone away.

You're right, my symptoms do sound similar to the hyperacusis thing. One thing though is that sounds do not appear to be louder, they just irritate my ear a lot. And also it seems that the sounds that irritate it also make me feel dizzy a lot too. But sometimes it has gotten bad enough that I just have had to turn off the tv and also avoid talking too loudly myself. I know that before I had the surgery in my other ear, I would have the same sort of problem when they would give me the audiology exams in that ear. They would keep raising the volume on the tones and words and it would start to hurt and make me VERY dizzy.

I think I will have to make an appointment to go see my current neurotologist here in town, despite the fact that I've already seen him twice in the last month or so. I'll just have to really press him on this issue since it hasn't gone away.

have you been tested for superior canal dishence?(SP)
it can cause your symptoms...ask about that as well.
lib

lib, I just came from the doctor yesterday. I didn't ask about the superior canal dehiscence, but I described all of my recent problems in detail. I also was persistent in letting them know that I was having tinnitus in my ear along with all of the other things. I also said I was confident that this was the source of my balance problems. Anyways, he and the other guy in the room were both discussing the possibility that I had something in this left ear that was hard to detect. They thought there was a good possibility that I had whatever it was. I didn't realize at the time what they called it, but today I remembered seeing the word 'fistula' and could vaguely recall that as being what they were discussing. I'm 90% sure now that is what they were talking about. Anyways, I started researching what it was and it looks like that superior canal thing falls into the fistula category. So anyways, he set up some vestibular therapy stuff to try to help it.

I am really in distress about my situation. The doctor was very clear about the fact that they couldn't really do anything to this ear because it is the only one I have left. It's like I am in worse shape than other people not only because my one good ear is now having problems but also because they can't even do anything about it. I don't know where to turn now or how to have hope that this will ever get better or even have confidence that it won't get even worse.

wow!
where do you live? i think you need a top dr on this. maybe hopkins or dr poe in boston.

I live in San Antonio, so kind of far from those places. Keep in mind that the doctor did not say anything definitive about it, but was reacting to my persistence that I have a lot of tinnitus at the same time as my vertigo as well as all of the other things I mentioned in my first post. I even told him that I was confident that it had to be something related to this ear, although I didn't have any idea what it could be. He hasn't seen anything in any tests he has given me to indicate a problem, although I do have a very significant high frequency hearing loss. I'm not sure if that really means anything or not. He mentioned something about the hearing loss being caused by sports shooting, and I was like 'WHAT?! I have never done any sports shooting.' Then he looked at his notes and realized that it said 'no sports shooting.' I guess he lost that fact somewhere in the 10 years since I started seeing him.

So anyways, I have actually been keeping the possibility of going to Hopkins in mind for awhile now. In fact, my supervisor at UTSA who hired me for a research software developer position (I started March 7th) also recommended that I go there to see one of 'the world's best doctors'. She has a daughter that is severely disabled so I assume that they have already been there. But I have no idea how to get started in planning for such a trip. How do I find a doctor, get an appointment, and make other preparations to see them? How long do I need to plan to be there and on what timetable will they be performing tests? Is this going to be uninsured? I guess I can ask my supervisor if she can help me. I just don't know what to expect.

I am also already scheduled to see another doctor in Houston that I have not seen before. I am basically going there to resolve the dispute about whether I have a hydrops or not. But, I am worried that I am going to have to start all the way over with him to convince him that I do have a problem. It seems like a lot of these doctors don't want to believe it at first, and I'm not very good at expressing my anguish. I guess I will just have to try to be as clear as I was the other day about all the things that are going on.