"Alfie" is back, not a good sign, hrg and balance worse

I was here a long long time ago, when I needed it more. Like I said, things are not good for me right now. I hadn't had my hrg tested in about 5 years, until I moved closer to my grandsons and had a hard time hearing them. So, now I have a moderate to profound SN hrg loss. I had no idea it was that bad, but my life style has changed to being more of an introvert mainly due to balance issues. Right side I have vestibular hydrops and left side vestbular nueropathy. Yes, when I get tested. I get comments that I have "some of everything!" Add this-15 years ago I had what was diagnosed to be a perilymphatic fistula. Yes, I know they are very rare, but I KNOW that I had one. The first time it popped it was after a dive off a boat in a high alpine lake. Immediately i knew something was wrong. My symptoms kept getting worse until I could not make it from my bath to my bed on my own. Bed rest at a 30 degree angle seemed to heal it. That was in October, on New Years day I reached into a chest freezer and heard and felt it pop again. Horrific symptoms again, lead to surgery. (Again, I know controversial). BUT I lived it, when I could I researched it and I concurred with Dx. Addition was that previous to all this I was not feeling well and a round of docs lead me to a rhuematologist, and previous to the ear crap, labs showed Anti Nuclear Antibodies of their labs levels at 1:640. So the ears were presumed to be AIED. (5 years ago they were back to normal)

Sorry so long, it is late and I shouldn't have started my worry here BUT after a really hard sneeze. I think I popped the PLF again. ANYONE here have the experience of a PLF? I have moved states and then to another town. Before the sneeze 'pop' I had been to a new OtoN. All he had for me was a Duh, I don't know and a "we like it when we get the rare patient in here that uses the BIG words that we use!" Just a pure tone test and a 10 minute interview.

I am going back to the OtoN that Skye and I loved about 2 hours away next week. I had just set up the app't before my scare.
I guess I just need someone to say that you understand inner ear stuff sucks and you know what it is like to be scared and also live alone.

Too long, doubt many have gotten this far, I know nothing about my case is normal even for the abnormal!

 

S, a friend of ours says that you are doing great! Congrats! Thanks for the well wishes.