Having my VNS tomorrow.

Dr derebery told me her rule of thumb was, try av for a month. If ANY improvement then 2 more months. And she had patients who took for years. I had some positive change in two weeks but a month brought maybe 60%. Talk to all the doctors. You did not miss the boat, they did. Hang in there.

 

I am shocked that your doctor did this surgery BEFORE sending you to the MAV specialist. MAV is statistically much more common than MM, and should always be eliminated before surgery.

Here's my life coach advice. Get on the strictest MAV diet. Get on AVs immediately. Take the max dose for at least three months. Take the full JOH at the same time. Be sure to take 1000 mg of lysine 3x per day on an empty stomach. Stop putting these things off.

Good luck!

 

I agree with June and think this sounds much more plausible. Pupper, sometimes you have to do the best you can, with what you have, where you are; at a certain point you have to forget everybody else, and do what you feel is best for you. I support you, and whatever you decide to do for yourself.

 

You should be tested for EVERYTHING. That should be standard procedure for doctors. Get another doctor if yours won't do his job.

 

Ditto

 

Do you have any other symptoms, whatsoever, in your "good" ear? Tinnitus? Fullness etc? I'm no expert but if I had to guess, if it's not giving you any noticeable problems otherwise, I'd be more inclined to assume MAV than bilateral MM.

I've done more reading lately on MAV since it's looking more likely that that is what I am dealing with (in addition to MM) and I just read that MAV is much more likely to pop up than MM, and bilateral MM in particular is much more "rare".

That being said, there's a lot of dispute about where the line is drawn between the two disorders. There's SO much overlap in symptoms and neither has a known cause (per the medical establishment. I know many on this board feel otherwise). My own oto pretty much believes they are often two sides of the same coin.

I think the distinction between the two is more academic than practical UNLESS you are talking extreme measures like a second laby or other destructive procedure. It might be helpful to read up on some of the MAV treatments, like diet or even migraine meds, and see what you can try to do to address that issue, if it exists.

 

No, i'm saying that in general. Your doctor should have eliminated everything else before doing surgery. Now you need to get another doctor who cares about you enough to test for everything.

 

Is there a test now for Menieres? When I was being diagnosed (just a few years ago), there was no test. All the doctors could do was look at symptoms and rule other things out (sometimes with tests).

So from that perspective, I agree that the first question would be: Do you have symptoms in the other ear?

My oto has also told me recently that the latest research is that MM and MAV are connected. I think they are still figuring it out. Clearly there is a connection for many of us, at the least.

 

No test because no definition. It is a diagnosis by exclusion, a set of symptoms not explained by anything else. It may be that it can be caused by sever different things or a combination of things. You may hear an immune system thing,mehich covers a multitude of sins.

 

There is no test of MM other than elimination. You CAN test for PLF, SCD, etc. They should be ruled out before diagnosing MM.

 

Also the mri will rule out acoustic neuroma and ms.

 

Sorry to hear pupper. I have cut out so many foods my diet is very bland and sometimes I think it helps and other times I do not. My fear is that if that I went back to eating the food I cut out then my attacks would be worse

 

So sorry that happened--the spinning is bad enough without the big dose dose of disappointment.

That is very interesting that there is a time pattern. That does sound like something other than Meniere's.

 

I think i have read that there are times when the there are 'threads' of the vestibular nerve that occur on the hearing portion. When this happens, the vns may not be successful. It's just something i think i might have read here so this may not be accurate but it might be something to ask the doctor.