I am in the process of setting my appointment with Dr. Gianoli in Louisiana.
I have been diagnosed with everything from PLF to MAV to Vestibular Neuroitis to Anxiety to …you name it. No cure yet :?
I have asked around and this guy’s name keeps popping up as the man to see when you are at your end of questions and answers.
I will keep you posted and see what he has to say.
Fun times for all…
What happened with you and your appointment with Dr. Gianoli? Are you doing better, I hope?? I too have the ear popping thing you mentioned on earlier posts that is obnoxious and can even start to sound like rice krispies (and I lose my hearing when it gets bad, but then it comes back if I pop my ears) - it gets a lot worse when my overall symptoms get worse when under fluorescents (or when I have to stare for a long time at my computer or another backlit screen). I think it’s all related to nerves over-firing when they encounter stimuli. I wanted to personal message you but that is not allowed anymore on the forum!
I know of another guy who has this issue who is not on the forum and at his wits end - I think we all have MAV but it depends what symptoms you get depending on which nerves are affected by it. I think my cochlear (hearing) nerve can get involved when my symptoms get bad along with the vestibular nerve etc. I’ve had MAV for three years and it’s been a nightmare.
I’m trialing topamax based on the advice of my neurologist and it’s helped reduce some of the ear fullness but not prevented the ear crackling yet - but my balanced has improved thank goodness! Have you tried topa? I was curious how you’re doing and if you’re on any meds that are going well for you. I’d be very appreciative to find out what if anything is working for you!
I just got back from my second visit to Dr. Gianoli. I had a PLF repair in November of '14 for my left ear…a PLF repair for my right ear in November of '15. Per comprehensive testing, I showed up “positive” for a fistula in both ears. I had a patch placed and followed the PLF protocol. That being said, nothing has changed much for me yet. Many symptoms have resolved since surgery though. Ear pressure/E.T. dysfunction has been fixed. Pulsating / vibrating in the ears has been fixed. However, I still have extreme ringing (escalated when I am symptomatic), light headed, etc. I am not taking any medications for MAV currently. I did take some earlier in my plight, but they did not seem to have an effect on me. I will be seeing a different physician in a couple of months to see what the next steps are. Several times during the day, my tone in the tinnuitis changes. When the tone changes, I instantly feel better. Do not know what this means…fluid in ear shifting, ear pressure changes, ??? Feel free to email me at email@example.com to discuss more. Take care. Todd
Do not go see Dr. Gerard Gianoli based on Internet reviews when you do not know who posted them! I did this mistake and I lost my life. I went to see Dr. Gianoli and he diagnosed me with what doctors call a scam PLF diagnosis. He recommended a “simple procedure” and he left me on permanent disability. I lost my hearing, he left me with chronic debilitating vertigo and nausea, a monstrous tinnitus, a pressurized ear and chronic neurological pain from his surgery. After destroying one ear and my life he he told me I need surgery on the other ear as well.