I'm looking for a qualified specialist on Perilymph Fistulas.

I was planning to do a phone consult with Dr Hain, Chicago, but he no longer does phone consultations

I may have to book a trip to Chicago, but if anyone can recommend anyone else, preferably in NZ/AU, but anywhere in the world if they're good and they have the right credentials.

FWIW, I'm not looking for treatment, as such, as much as a qualified specialist assessment of what's been going on since "the accident". Once I get an official assessment of Perilymph Fistula, then I can get "back in the game" with proper access to treatment, locally. In the meantime, the "official" diagnosis is "lazy, crazy and stupid."

Thanks!

Check out this link. The author is in ChristChurch. http://www.dizzytimes.com/archive/index.php/t-3771.html

Thanks!! That could save me a few thousand dollars

http://www.healthpoint.co.nz/default,11477.sm

If anyone else has any suggestions...? Since I'm up against a bureaucratic system, it won't hurt to have multiple assessments, especially if some of them might be covered (by DHB, NZ's public system).

FWIW, here in NZ I'm up against ACC. It doesn't seem to matter who's right or wrong, only who can produce the biggest pile of documentation.

Interesting article and there are only few online about this condition. One person reported how he sleep in incline position, don't bend over, symptoms always there once wake up etc., is all true for me.

I brought up this topic to 2 otolaryngologists (out of 3 since 1 specialist has his own trouble - they are humans too!). One willing to open my skull and patch it Another one did some test (looks like bogus) which didn't show anything. I have done all the ENT tests twice and hearing 3 times which all fine. 2 CT scans on my ear which is completely unnecessary and I didn't know they did when I was at hospital.

Mine is definitely not vertigo but all other disabling symptoms especially sound I think Sunlight doesn't bother me much but certain carpets, soothing light (yeah right it is not soothing at all) completely throws me off and I walk like a drunk. My head is always heavy no matter what.

imnotcrazy : I am not sure what your symptoms are. Do you have true vertigo or over all instability, sound intolerance, anxiety etc.,

Probably you know there is no sure way to tell and is an exploratory surgery. I talked one lady without head trauma who did the surgery and she said no vertigo for a year after surgery but came back. She also lost feeling one side of toungue since doc severed some nerve.

She went to this doc and said not really a nice doc.
http://www.dizzydoc.com/

Some times it heals spontaneously and some time it doesn't. If it doesn't then only way is exploratory surgery.

That is why I am using Xanax on a need only basis now - meaning when I feel really terrible and/or I have to be some where.

I was planning a phone-consult with dizzy-doc, Chicago, but he doesn't do phone consults any more. Finding that article from a doc that's (kind of) nearby is great.

Since my case is still pending, I can't comment too much on details. When it's sorted, I'll post a more complete account. Short version: When I found the list of SCD symptoms on Wikipedia it was like a check-list of what I'd been going through. At first I thought it was SCD, but ruled that out, partly after an ENT reviewed my scans and partly after something else, which I'll mention later. Ruling out SCD, PLF is pretty much what's left with that cluster of symptoms.

After I found that list of symptoms it took me a few months to actually read through them all! But I'd been describing those symptoms for months before finding the list. With oscillopsia in particular, I though I was going crazy! Until I read about it, and found out that it's part of a cluster of symptoms for SCD/PLF. I reasoned to myself that I may be completely insane, but I'm not crazy enough to "perceive" or "make myself suffer" from that particular list of obscure symptoms without any background in this area of medicine; it had to be "real".

Another thing I'll mention... My oscillopsia was/is primarily (almost exclusively) on a horizontal plane (eg, vertical sign-posts look like they're vibrating). When I was describing this to a local ENT, he looked at me like I was crazy and said he'd only heard of oscillopsia on a vertical plane. Looking into that, I ruled out SCD, before he got back to me with the scan results... A canal dehiscence would only induce oscillopsia in the plane of the affected canal. For SCD, that would be oscillopsia on a vertical plane. For PLF, it could be oscillopsia on a vertical and/or horizontal plane.

So, I'm highly confident that it's a PLF case, but until I get an "expert" (or several! That would help too!) to sign off on it, my official diagnosis remains "lazy, crazy and stupid". My GP is calling it PCS, which at least qualifies me for the dole.

The formal diagnosis from the "experts" was "depression, anxiety and hyper-vigilance", but that's been revised to "nothing wrong with you, get back to work."

The "game plan" is to have one or more ENTs comment on the assessment/diagnosis of PLF, and comment on the ongoing/long-term effects of that. Then bring those reports to a neurologist, who can then say, "Yeah, that all sounds right. But even if that's not correct, this is still a case of PCS." Then bring those reports to an occupational specialist, who can say, "Yeah, that all sounds right. And getting back to full-time work is not a viable option right now." Then, with that documentation in my hand, I'll be in a position to go head-to-head with ACC and get my life back on track.... Among other things, sorting out my access to rehabilitative health care. Having a proper diagnosis will help with that!

imnotcrazy : Wow! You have done a detailed analysis If you discuss these things to "specialists" they get annoyed because you know more than them. I know what you say about depression, anxiety etc.,

I certainly know something wrong with vision because of dizziness but I can't really pinpoint. Interesting about the oscillopsia. SCD also ruled out for me. PF and PCS overlaps so much it is tough and close to impossible since they there is no clear diagnostic tool and all based on symptoms.

If I am not wrong someone on this board did PF surgery and had a good success.

Also neck and vision can also cause these symptoms. I did some Vision Therapy which didn't help much but some had good success. I am going after neck now and if that doesn't work I think I am going to ask them to open my skull and take a look Only issue is I don't know which side (left or right). I have tinnitus on left ear and they put some steroid shots on right ear saying something wrong there and of course steroids didn't do anything.

I guess this dizzy, painful journey continues for now.....

Please keep posted.