Looking for ear specialist - Perilymph Fistula
 

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 :confused: 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. :eek:

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. :mfr_wha:

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.

Based on my experience (which does not include a formal diagnosis, but I'm confident about this), PLF is more of a constant "acute" dizziness... Like really a sensation of spinning, or the floor/bed/chair moving, sometimes violently. PCS is much more mild, like a gentle rocking, or an occasional "sharp" rocking feeling, but mostly more of a vague disorientation, often in a physical space, rather than an acute dizziness.

My background includes a lot of physical movement stuff (gymnastics, climbing, skating, martial arts, etc) so I'm more aware than most people when I "switch" from vestibular input to tactile and visual input to determine where I am and how I'm moving (we all do this sometimes, but most people are not aware of it; usually vestibular input is in charge, but sometimes gets help from visual and tactile input). My experience made it VERY clear to me that my vestibular input was broken. It was sending "noise" instead of "signal" to my brain.

I've got a strong stomach, so I never really got "sea sick", except immediately post-concussion.

Two stories that may help you figure out if it's more likely PCS or PLF...

1- I was sitting in an office and someone was showing me a google-map. I was watching the screen when they quickly zoomed in and I nearly fell out of the chair. I had to close my eyes, grab the sides of the chair, feel that my feet where firmly flat on the floor without pushing too hard, and push myself back into the chair.

2- I had just gotten off a bus and I was walking (like a drunkard!) along a row of stopped buses. The buses were taking up about half my field-of-view. When the buses pulled away, I nearly fell over. I had to look at my feet, partially close my eyes, hunch a little bit to drop my centre of gravity and focus on the feeling of weight in my feet; shutting out the visual input and (consciously) focusing on tactile feedback (the feeling of weight in my feet; left/right/front/back).

Those are, for me, examples of using my visual input (and then tactile input) to compensate for vestibular input that was not working. When the visual input changed from a steady point of reference to something that was moving, my brain automatically tried to hold me "steady" against those moving points of reference: not gonna work! A steady reference is required to hold oneself steady!

The "switch" happens for most people automatically, and contributes heavily to cognitive fatigue... The brain just isn't meant to process visual and tactile feedback that way, at least not all the time. PCS, in my experience, doesn't result in that compensation resulting from vestibular input being "broken".

Ok. You are an expert in this dizziness. :) Not something we want to be but forced to. My dizziness unstable feeling happens again in certain spots even in my apartment. I am not like you gymnast or anything but when I did salsa dancing I can make a full turn pretty fast and never losing balance and people used to tell me I can turn pretty fast.

Now when I extend my arms and make a full turn (as per my Neurologist exercise) after 2nd turn I feel like I am going to fall down. My stomach used to strong even after my TBI but the past 2 years it got worse. I think that happened because of all crappy meds I tried. When I quit Elavil I suffered a great deal.

For me certain sounds and not well-lit rooms cause dizziness. May be I have both PF and neck issues. Who knows? Now I am going after pain and see how it works.

I saw a new spine doctor (nice doctor - not chiro or anythng but MD) so new set of treatments begins. I will be getting a cervical collar and see how it works for all this. Next is prolotherapy, epidural and botox may be. If it addresses both pain and dizziness I will be a very lucky giuy. I wish.:winky:

Got some Tramadol and I may try it. It is not a narcotic and acts like it ? Not sure any medicines helps for you?

You are the dizzy guru and handling it good. Thanks for all the detailed explanation.

Sounds that consistently made me dizzy: Buses & trucks idling, and My Bloody Valentines' 2nd album, Loveless. I met an audiologist, socially, and she said that some people with ear problems can experience dizziness with different sounds, and it can vary widely from person to person; for some people it could be the sound of a paper bag being crumbled, for others it could be anything loud. Sounds like Tullio... I'm not an expert on that. A neurologist told me that I'm not experiencing Tullio, but that doc earned no respect from me; partly because he's a **** and partly because he sent me to some clinical tests and then concluded that there's "nothing" wrong with me except depression, anxiety and hyper-vigilance.

sleeping a lot = depression
heightened startle response = anxiety
dizziness and headaches = hyper-vigilance

If not for my background with physical movement, I may have believed it. I also have first-hand experience with depression, so it's easy for me to distinguish the difference between sleeping excessively due to being absolutely exhausted all the time, and being depressed; the two are quite different.

You get dizzy from dark rooms, but you do ok in well lit rooms? That I've got no experience with. I got headaches and eye-pain from bright lights and I found dim/dark rooms much more comfortable; I suspect this was the visual parts of my brain just being overloaded...?

Since "the accident" the only meds that have been suggested are mild pain killers to help with headaches; which I've never taken.

Hello All -

Newbie here.... Glad to run across this site as my symptoms relates to this board. I am currently in the Virginia Area and in need of a Dr. who specializes in PLFs.

Starting Jan 2008, I was weight training (sit up w/ weights) and once done...when I stood up - BAM! The room was spinning, I got dry mouth, confused, totally off balance. I immediately went to the ER and was diagnosed with Dehydration and was told it should get better after drinking plenty of fluids. The spinning sensation stopped w/n a week, however, I still fight off the feeling of lightheadedness on daily basis after walking for only 15 minutes so I am very limited to types of festivities. In addition the constant struggle of brain fogginess, “woozy”, floating sensations, extreme fatigue when only doing simple things like grocery shopping, having difficult times in large crowds, around loud noise and esp echos and when there is a variety of ppl talking at once.

Since Jan 08, I have gone to every type of dr. you can name (20 and the list keeps growing) to find a Dx. Test were performed on my heart, brain & spine and all came out completely normal. Then finally in Nov. 2011, after a visit to a Dr. at wash. hop. center who has been mentioned on this board...He was the 1st to make sense of why I was having these symptoms. He Dx. me with perlymph fistula (PLF), esp. since all other vital organs and health history is NORMAL. However, I wasn't too comfy with his Dx. because his face expressions shows that he was getting irritable and annoyed when asking him questions of concern about the surgery.

Perhaps with his 1000s of patients that he stated he have performed on, he hears patients complaining about the same symptoms over and over again and so he has become a little desensitized and therefore not as compassionate or maybe just a little burnout. Whatever, the case may be, I decided to go for a second opinion.

Second opinion was given at John Hopkins where I was told that this is the best hospital to go to as they specialize in the area of inner ear disorders.
John. Hop. Dr. gave me a totally opposite Dx. He believes I have "Migraines" (MAV) because based on my health history reports that I provided...and my MRI (brain & inner ear canal) & CAT Scan (inner ear) films and medical notes they all state - "NORMAL" and my overall health records (LABWORK) is NORMAL. In addition, to my age of 36. He didn't see how any of my symptoms relate to a PLF. He also mentioned that he didn't see a PLF in my film charts (CAT SCAN inner ear). So makes no sense to him that surgery was recommended. Then provided me some brochures on "migraines" and went into explaining his Dx.

So now I am totally confused and totally down because I'm back where I started.

I did mention that I don't understand how Migraines have anything to do with me fighting off the feeling of lightheadedness on daily basis after walking for only 15 minutes. In addition the constant struggle of brain fogginess, “woozy”, floating sensations, unbalanced, extreme fatigue when only doing simple things like grocery shopping, and having difficult times in large crowds, around loud noise. And before all of this I was perfectly fine.

After my spill, he just mentioned that Migraines occurs at anytime. So I just listened and took the brochures and left. I felt it was no need to try and keep prolonging his opinion.

Well at this point, I am not sure what to do but keep trying. So I plan to go for a 3rd opinion at Georgetown hosp.

Does anyone know of any Dr. who specialize in PLFs in the VA/DC/MD area?

And for those who have had the PLF surgery......did your dr. see the inner ear tear prior to surgery?

I hope all is well for everyone....and really appreciate your help!

Claudia

@Claudiaj - I didn't know CAT/MRI (or any other diagnostic test) could rule out a PLF...? Based on what I've found, it's almost a diagnosis of excluding everything else, and then identifying a bizarre cluster of bizarre symptoms, which may include headaches/migraines.

You mentioned crowds; that was a big one for me. With a "sea of people" it was hard for me to get a fixed visual reference, and very disorienting. Understanding people talking in a crowd is still a problem, for me.

Definitely get a 2nd (or 3rd, or more) expert opinion before having ear surgery.

imnotcrazy and others,

Check out the "Scared to have conversations" thread. It discusses these issues of being in a crowd and the audio struggles.

Claudia,

I live in DMV area.

As imnotcrazy pointed out CT Scan/MRI and all others are pretty much useless and is all based on symptoms. Unfortunately our symptoms can mimic lots of other conditions too.

I have most of the symptoms you all mentioned. My Neurologist (nice guy with holistic approach and not a drug pusher) told me to go for a walk. As you mentioned all that makes me more light-headed. Crowds are a big no-no to me too. I am even trying the BOSE best noise cancelling phone (since ear plugs didn't work and made me more imbalanced) and didn't work that much.

For certain frequencies it helps. So I have to wear and take it out constantly based on the environment. So it is a mess.

If you check out dizziness-and-balance.com they don't highly recommend surgery. My co-worker had true vertigo and had surgery (from dizzydoc at Washington Hospital Center) and good only for 1 year and lost feeling one side of tongue. But she didn't have any terrible symptoms like us. I am willing to lose feeling on one side if only it can cure me.

Even she told me that doc is not a nice doc and rude. I don't know what he expects - just to give our head so he can open it up and patch the ear based on assumptions?

I saw this other doctor (George Town hospital - Jeffrey Kim supposed to be good too) and he did all tests etc., and said I have anxiety.:) His conclusion is purely based on tests which we know the deal. But He didn't even do any test for tullio's phenomenon.

Get few more opinions but not that many even in a big city. It is a very tough decision to go for a surgery.

I went to a spine and pain doc and now wearing a cervical collar. It does help which is bizarre. So now the problem looks like in neck or ear. Went to many chiros (including upper cervical) and no help. Have you tried any collar? How about any medications like Xanax? I even wear them at night which reduces my headache and dizziness in morning. Now with that I can drive more comfortable. Now I am going after neck before messing up my ear.

If anyone gets any success for this debilitating dizziness, pain etc., please keep posted. I do the same.

Cheers!

So, I'm still looking for doc. I went to the Dr in Christchurch. Pleasant guy, but he just seemed like he was busy with other stuff and didn't really give a crap about me.

His assessment is that I didn't have PLF, but he can't point me towards anything else, and the more I learn about PLF, the more certain I am that that's what was going on - and the more confident I am paying for a proper assessment.

Looks like I might have to spend some $$$ travelling overseas... If anyone can suggest a PLF doc in US, AU or UK, those would be the places that are easiest and/or most desirable to travel to, and also those doctors' opinions should be considered credible in NZ. I'm also interested in doctors in other countries, in case I have to make a "B list".

Thanks...!

I know someone who the PF surgery with the following doc. I think I mentioned before.

http://www.dizzydoc.com/

He is a rude doctor and not very compassionate from what I heard. I have been contemplating about the surgery since it is exploratory and there are is no definitive test to diagnose and confirm :confused:

But good luck and keep posted.

Cheers!

Hi everyone, I am new to this forum, so please forgive me if I am not posting correctly-never posted online before! :) I have been reading these boards and others for quite some time and felt compelled to share my experience, as I have just undergone a PLF repair this past Tuesday by the surgeon mentioned in the previous post. The decision to undergo repair was based on my 2 year history of baffling symptoms (fatigue, minor imbalance 24/7, cognitive issues-it took a while to figure out my issues were inner ear related since I had no hearing loss or spinning vertigo) and a battery of hearing/balance tests performed which showed endolymph hydrops in my left ear (yet no vertigo, so it was definitely not classic Meniere's) and a mildly positive platform pressure test. I can't pinpoint when this all started but i did have a minor whiplash injury due to a fall around that time. I had tried diuretics and a reduced salt diet, which did help some, and tried calcium channel blockers, which gave me side effects. I also had an MRI and bloodwork to rule out other issues. I understood going in that this may not be a cure, and was the next logical step in the elimination process.

The surgery went well from a technical standpoint, and although there was no evidence of a leak, this is apparently not unusual at all-they just patch anyway. I spent 1 night in the hospital. I have had surprisingly little pain, and have only taken Motrin once. I cannot hear out of my operated ear, and this was expected until the swelling subsides. I had been hopeful that my balance issue would be immediately resolved, but this has unfortunately not been the case-my balance has worsened since the surgery. Aside from the usual swelling causing issues, the surgeon thinks that i may be in the minority of people who may have an increase in the hydrops pressure due to sealing off the supposed leak. I am increasing the dose of my diuretic and adding Valium for the next couple of weeks, until hopefully the extra fluid is reabsorbed-if it isn't, there is apparently an additional surgery that can be done to help remove the extra fluid. I am in wait and see mode and keeping my fingers crossed! I have had only very minor facial and tongue numbness, which is hardly noticeable and already going away.

Hope this has been helpful-if anyone has any questions, please feel free to email me (I think you can do that on this forum, right?). I will do my best to share my experience-I don't wish this kind of balance condition on my worst enemy, and know how frustrating it can be and how it can rob you of your former life. I also know how daunting it can be to try to get a diagnosis and to be faced with making a decision regarding surgery that may or may not help. :eek:

Wishing everyone the best in their journey back to normalcy!!

Dizzygirl, So you took the plunge and did the surgery with dizzydoc in Washington D.C. So you must be really struggling with dizziness like some of us here. I completely understand. That is little disappointing your balance issues got bad. May be it takes time or another surgery fix it?

This dizziness pretty much crippled my all activities. Being some sort of dizziness 24/7 can do that to you. For me all my tests are negative. My balance get affected and heart start racing only in certain environments. So no one knows it is coming from eyes, ear, neck or brain or altogether. I had bleeding on the brain so all this makes things much more complex in my case.

Right now I manage with Xanax. Diuretics made me more dizzy. I am taking a calcium channel blocker (Verapamil- low dosage) and really not sure it helping. But works for my stomach and keep my BP in control. Ear plugs supposed to help but in my case it makes my balance worse. It is extremely daunting to make that decision to go for surgery. You cannot blame the doctors too because there is no other way they can find out.

Thanks for posting and please keep updated how it goes if you don't mind.

I sincerely hope you recover from this terrible condition.

Cheers!

Happy New Year Everyone! Claudiaj here.

Well I am still hanging in there. As a matter of fact, Jan 26th will be 5 yrs. as I continue to search for a Dr. that I feel comfortable with.

Dizzygirl - thanks for posting. I really wish you the best as you recover. As I really wasn't happy with that Dr. and his mannerism. I understand that the surgery may or may not work. But I really got a bad vibe from him that if it didn't work, his patience would only go for so long. Or it could be me and the anxiety that kicks in when I just think about the unknown results for ear surgery. That's a very brave step you have taken and please keep posting esp. if you ever feel down. Recovery is a hard process and it's nothing like support from people who really understands your symptoms.

I have been to (2) other Drs. which neither of them agree w/ the dr. diagnose at Wash., hosp. center. So now I am totally confused. One was at John Hopkins...who diagnosed me with MAV and sent me home w/ brochures. I was so disgusted when I left. I really didn't agree with his diagnose especially since he couldn't answer some of my basic questions. In addition, I received a letter a month later saying that he was moving on to California. I think that was confirmation that he wasn't really interested in my situation. Now I am working with the dr. mentioned at Georgetown Hosp., who can't give a diagnose due to the unknown. However, recommended that I continue to go through physical therapy treatments. So really not sure w/ him either.

So in the meantime, I still have hope that I will find the right dr. Has anyone heard of Metropolitan Neuro Ear Group???

I can say my days are better when I maintain an adequate level of vitamins and Minerals in my body especially Iron, Zinc, Magnesium, Vitamin D and the list goes on. It's even to the point if I go one day w/o taking any vitamins. My body is totally OFF. Not sure why or how my body detects so quickly or behaves so inadequately when there is a deficiency, but I can say its a huge difference between the two. So I recommend getting a blood test to check for adequacy for all vitamin and mineral levels. Also, I have totally eliminated all meats from my diet. As each time I would consume meat, especially beef..I would get so nausea. And seafood seems to contain large amounts of sodium.

So my symptoms are worse if either of the following happens even w/ adequate vitamin/minerals levels......I wake up in the mornings, don't eat on a reg. schedule like every 2-3 hrs, drink less than 33 ounces of water a day, if I have an upset stomach, in very warm environments and if I tend to do small activity 1st thing in the morning (like cooking, cleaning or walking more than 10 min) and when mother nature takes her course. My symptoms are very light-headed, nausea, unstable when standing or walking and a cloggy left ear. Other than that, if the things mentioned above does not occur by the mid-day, I am more functionally just not 100%. At least now, I can go to the movies and not as scared to leave my home and be around family and friends.

Well, I will keep posting as I continue this journey and I pray for all of us to have a life back to normalcy.

Claudiaj

apparently i'm now looking for an "otoneurologist" or "neurotologist".

apparently they can fill in the blanks between head-injury and ear-injury that are missed by otolaryngologists and neurologists.

any recommendations in. new zealand, or nearby countries?

thanks...

Hello Everyone! Still hanging in there. Has anyone ever heard of a Compression Loop Syndrome or sometimes called neurovascular decompression" or "microvascular decompression" of cranial nerve VIII??? Based on a YouTube video that I happened to come across when searching for lightheadedness/dizziness, Vascular Compression Syndrome is when an artery is laying on the Vestibular Nerve(within the ear). The symptoms of it causes vertigo, dizziness etc.) The test to confirm it is called a "MRA/MRI" testing on the 7th/8th cranial nerve...the video explains further for more specifics of testing. But she says that the test is easy which will help to confirm if that's what's causing balance symptoms. Anyways, just thought this was interesting and worth looking into esp. when all tests comes out to be NORMAL. Hope everything is going well with everyone. ClaudiaJ

anyone heard of the Dr. at Metroploitan Neuro Ear group????

PLF symptoms
 

I was trying to do some digging on google about what PLFs are and what recovery times can be, and am lucky to have found this site! It seems to be a great spot to connect with others who are experiencing similar symptoms.

I had a tympano mastoidectomy in March to remove a cholesteatoma in my inner ear. Part of the procedure was a bit impromptu as the cholesteatoma had grown so big, it eroded the membrane over oval window. So my ENT patched up the oval window while she was in there.

During the recovery, about 4 weeks post-op, ringing in my ear developed and has been going on for nearly a month's time. My doctor suggested a regiment of bed rest and thought that perhaps it may be the result of a PLF and the graft not holding or being torn.

After reading earlier posts on this thread, my symptoms do not appear in line with the predominant symptoms others are experiencing. The biggie for me has been the constant loud ringing and dealing with the inactivity and everything else that goes along with withdrawing from so much, so suddenly. Are any folks experiencing such constant ringing along with PLF symptoms?

Hello Ringing247. I have a constant sound of ringing more so like the older model TV sound when cutting on and off. Very weird. To overpower it or better yet to tune it out, I have to have a fan on or radio. It's horrible when I am in a quiet environment. I have yet to find out how why this is happening.Anyways, I totally can relate.