I'd thought I'd bump this thread as I am really starting to suspect that I have a perilymph fistula, cerebral spinal leak or some other leak.

When I perform the perilymph fistula test and apply pressure to my tragus (flap near ear canal opening) I experience a fluid like sensation in the ear and it moves to other places. I only experience this with the left ear. Interestingly I experience positional vertigo on the left side.

I first did this after I experienced ear pain after taking effexor. The pain and dizziness subsided somewhat after performing this maneuver.

I recently had a stretch of good days after performing this maneuver and I thought I'd try it again. I noticed the fluid like sensation again. Additionally, I started to feel marginally worse. Incidentally, I also upgraded to a firmer pillow that keeps my head slightly higher up.

Anyways I'll report back if anything comes of this. I saw two neuro-otologists. I saw the first one about 2.5 years ago and he seemed to think a PLF was possibly however it is a controversial disorder. I saw the next one last year twice and he said he supposed it was possible but didn't make much of it. He only saw me for about 10 minutes and to be honest he didn't seem that qualified. He sent me in for more VEMP testing which didn't rule out that there was something wrong with the inner ear. Anyways, PLF was never really the topic of the visit it only really came up in passing (as a possibility). They said my issues were likely related to the brain.

Neither really performed any tests or ordered CT scans. However, the first indicated that a CT scan is necessary for a proper diagnosis.

I don't think there is anything anybody on NT can do to help you with a diagnosis of a PLF. You need to seek out a doctor who will do more investigating.

Thanks for the advice. I definitely have something going one with the brain (as I had a cerebellar lesion). However, I highly suspect something else is going on that might be exacerbating the problem.

I live in Canada and it is hard to see these sub-specialists sometimes. I will report back in the next few weeks/months.

Sometimes I suspect I have PF too. I consulted 4 specialists in DC area and one of them (Jeffrey Kim) supposed to be good at GWU hospital.

When I mention PF, they just don't know what to say because no tests can detect that minute hole. I have done about 2 CT scans and MRI in ear and nothing came out indicating anything wrong.

Only one doctor willing to do an exploratory surgery but I backed off after hearing my co-worker has vertigo and she went for the surgery with another k own dizzy doctor.

She said her vertigo gone for about an year and one day it came back again with full force with tinnitus. She thinks it was not worth it. Then again it all depends on many factors and luck plays some role in it too

Fair enough. Please consider doing the perilymph test on yourself. I believe it is safe (however, please do at your own risk).

Apply slight pressure to the tragus and see if you get vertigo (or the fluid like sensation I do). The test isn't 100% accurate. Regardless, PLF is very rare so I am probably wasting your time.

Fistula Test - YouTube

I thought I'd post this in this thread because it is technically a type of inner ear fistula.

I met the same neuro-tologist (specialized ear doctor) again that I met three years ago.

Basically right off the bat he said that he thinks I have semicircular canal dehiscence, as my prior vestibular test results indicate that this is a possibility.

Shame he didn't say this three years ago. He did mention PLF though...Now he says he isn't a PLF believer...

Any ways I thought I would mention this as a semicircular canal dehiscence can create symptoms that are similar to PCS and MAV. That said it is a very rare disorder so most people on this board probably do not have it. I do not get the loud body sounds (like hearing eye balls move) that some people get. However, I do experience sound induced vertigo.

The doc is going to review my scans and get back to me.

Cerebellarmaniac,

I was in a car accident 20 months ago. I have been dealing with PCS since. My main struggles have been disequilibrium and headaches brought on by sensory overload. After appointments with physicians, vestibular, ocular and physical therapists, my neurologist suggested I see neuro-otologist to test for a rare disorder called superior semicircular canal dehiscence (which can occur with head trauma). I went with little hope anything would be found. I tested positive for it as seen by an abnormal VEMP test and CT scan. I had my round window reinforced 4 weeks ago. I can't see anything positive from it yet, but I am still hopeful. I hope you can move ahead quickly, if indeed that is your issue.

Midwest

Thanks for the response. I don't always check this board so sorry for the late reply.

I saw a neuro-tologist about 2-3 weeks ago and he basically said i had SCDS right off the bat. He said he needs to review imaging (MRI). I pressed him on the CT (as I believe a CT is a better scan for SCDS). However, he didn't seem to want to order a CT. Anyways he's an older guy maybe it's time to find a new doc. Interestingly, I had all the VEMP testing done 3 years ago and they never brought up SCDS. Only the vague "visual-vestibular mismatch"

I thought PLF was likely and thought SCDS was another likely diagnosis based on my own research. I still haven't received a call back (usually that means it's nothing)... I'll report back in a few weeks.

Also, their is a great SCDS support forum ,if you aren't aware. SCDS Support • Index page However, it requires an account to view it.

EDIT: IT LOOKS LIKE YOU ARE ALREADY ON THAT FORUM!!!

Good luck

Also, do you mind expanding on your surgery? What approach did they use?

Cerebellarmaniac...

What symptoms led your neuro-otologist to believe that you have SCDS if you don't have the loud body sounds?

What was the outcome of your tests?

Thank you!