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I was mis-diagnosed with MAV for years

Hi there,

Regarding Dizziness and Vertigo associated with your anxiety, you all need to get checked for a condition called SCDS. I was mis-diagnosed with MAV for years and was taking Amitriptyline for years and never improved but just slept all the time. Finally after switching ENT’s and Neurologists for the 3rd time, my new ENT sent me for a special CT scan that showed I had Superior Canal Dehiscence Syndrome. It finally explained detail of what was happening to me over 4 years. I immediately got off of Amitriptyline and onto Lexapro and a low dose of Xanax (0.5). So if your “blanket” MAV or BPPV diagnosis doesn’t seem like it’s correct or getting you anywhere, you should go to a Otolaryngologist and checked for SCDS. Finding out what i had was one of the best days of my life. I can now have my problem surgically repaired. Good luck!

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Hey Greg. It’s great to get answers and being presented with an opportunity of a single, if complex, procedure to end your misery can be amazingly compelling.

I felt the same when I was diagnosed with Secondary Hydrops and potential PLF after having had a couple of prior MAV diagnoses.

My prior doctors diagnoses did not make sense. I’m an engineer and they were unable to explain why I had developed such a condition despite giving them detailed information about a suspected trauma I had experienced.

However please exercise caution.

We had someone here recently, claiming they’d discovered a surgical solution to their predicament. They left the site to have the surgery and have failed to update us about how it went. We can only assume it was a failure as I’m sure if successful they would have loved to have promoted the result here.

Vestibular medicine is extremely under developed at present despite so many advances elsewhere. It’s incredibly disappointing.

I was convinced for over a year PLF surgery might be my way out. It’s not even that invasive. However I held off because I’d heard there would be some risk to my hearing and almost a guarantee of some loss. I’m so glad I held off because I’ve mostly recovered without needing any procedures. My hearing has not fully recovered and my tinnitus is still pretty bad but I can live an almost normal life once again without dizziness, imbalance or vertigo. All from just biding my time, keeping calm and remaining patient (for a significant part of the recovery I was not even on medication!)

SCDS surgery is extremely invasive and very risky to your hearing. I would urge you to get at least TWO more expert independent opinions from senior academic oto-neurologists before going ahead with it.

You should also consider finding other people who have been through it and determine how it went for them. Perhaps you’ve done this already? Not just those that are 3 months on from surgery, but 3 years or more on.

I feel for you buddy, but please take baby steps. Good luck my friend!!

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