Perilymph Fistula anyone?

Specific Illnesses & Conditions VM/MAV
21

Wow, sorry you had a bad experience at UW. If there’s one thing I HATE, it’s doctors who write a report full of wrong information and who don’t listen to the patient. A GOOD doctor has only ONE basic, needed characteristic: he or she cares deeply about GETTING THINGS RIGHT–getting the diagnosis right, getting the treatment right. Everything else follows from that, because in order to get those right, you HAVE to LISTEN to the patient and you HAVE to know your stuff, communicate correctly, and have a tiny dose of humility to keep you on the correct path.

I hope Dr. Wackym can help you. Yes, it looks like he’s a highly respected doctor. Some other people on this board (cannot remember who) saw him, I’m pretty sure, and I’m vaguely remembering they felt he was helpful.

It’s all very confusing and stressful, yes, but just keep in mind: you’ve done your research, you’ve seen specialists and are going to get another expert opinion; see what he recommends, then make your decision on what to do. It’s not a life-or-death decision, and as my current favorite song by Gerry Rafferty says, “If you get it wrong, you’ll get it right next time, next time!” :slight_smile:

Good luck and take care,
Nancy

22

Malikaiz–

The fact that there was a specific experience (the flights) that aligned with your symptoms, it is highly likely that your symptoms are due to physical damage caused by the pressure differences during altitude changes. You said that you felt badly in Zanzibar, started to feel a bit better, but after another flight with 5 layovers (which involves 10 massive shifts in altitude and ear pressure!!!) you have never been the same. It makes sense that a small fistula may have been created by the first flight–and may well have begun to heal on its own during your time in Zanzibar. But, the 5 flights home likely caused the fistula to tear further and irrepairably (on its own) thus causing your consistant and long term disability.

This makes quite a lot more sense than a typical migraine diagnosis, which is very rarely associated with a specific event other than head trauma. However–I suppose it is possible that a fistula could have opened, healed, but the damage and subsequent disequilibrium could have triggered an underlying migraine susceptibility to which you were previously unaware prior to that fateful trip.

If I were in the same situation as are you, I would have the surgery and the repair (which a large number of doctors perform even if they are unable to visualize the fistula during surgery), I would undergo the subsequent physical therapy–all of which may rehabilitate you to nearly normal. If that doesn’t work on its own, I would then seek advice from a migraine specialist and begin migraine preventative therapy, as it is highly likely that, at that point, you will be dealing with another beast triggered by an injury due to that flight. Note, however, it is very VERY likely that, if you have the surgery and undergo the subsequent therapy, you may well be fit as a fiddle with no further complications!!!

Either way, however, you are still looking at a few months of recovery. And, you know where to find your dizzy friends if you need support along the way :wink:

23

I am going to reply to some of the things dolfnlvr just said:

“This makes quite a lot more sense than a typical migraine diagnosis, which is very rarely associated with a specific event other than head trauma. However–I suppose it is possible that a fistula could have opened, healed, but the damage and subsequent disequilibrium could have triggered an underlying migraine susceptibility to which you were previously unaware prior to that fateful trip.”

My MAV actually started with a similar barotrauma. Even though no dr. really thought this or could prove it, I believe that I started with a fistula and it later (probably) healed- but several months after the event I developed chronic MAV, which was actually difficult to ascertain until I stopped taking xanax every night for a year which was how I was able to function at that time. Initial vestibular problems (BPPV, a fistula, etc.) can somehow trigger migraine in someone who is susceptible to it- I am positive that this is what happened to me. I am not saying that the poster has MAV because it is impossible to tell- but it is certainly possible that you have it and a fistula.

“If I were in the same situation as are you, I would have the surgery and the repair (which a large number of doctors perform even if they are unable to visualize the fistula during surgery),”

I want to dispel this- at least from my experience- most drs. DO NOT want to perform fistula repairs- they are almost impossible to diagnose, and the surgery carries risk- plus some drs. don’t even believe that PLFs exist! I had one surgeon tell me that you have to have hearing loss in order to have a PLF- this is untrue- so think of all the people coming to him with possible fistulas without hearing loss (i.e. me) and being denied the operation because of a faulty assumption about fistulas. I actually think one might be lucky to find a dr. willing to do an operation, even in an obvious case. Another dr. i saw thought that your fistula test had to be positive in order to have a fistula- this is completely untrue- but think of all the people he is denying treatment who happen to have a negative fistula test (me).

That all being said, I think you sound like you have a really good case for a fistula, and I am glad that you have found drs. willing to operate on you. You are lucky, because if you happened to see the drs. that I saw, I doubt that you would be offered the opportunity for surgery.

24

— Begin quote from ____

[I want to dispel this- at least from my experience- most drs. DO NOT want to perform fistula repairs- they are almost impossible to diagnose, and the surgery carries risk- plus some drs. don’t even believe that PLFs exist! ]

— End quote

Agreed!!! I was referring to the ones who actually perform the surgery. Once in, they often perform the correction. Didn’t mean to imply that most doctors will perform the surgery in the first place…that’s a big fat NO and I understand the frustration there!!!

25

Thank you so much for your comments!

I’ve been so stressing so hard about this. Im really hoping this doctor in Portland, Dr.Wackym can help me. He only see’s patients a couple days per week because he mostly does research. One of his specialities is PLFs repair techniques. I was lucky to talk to someone who had a PLF repair with him and is almost 100% cured still after 2 years.

My husband just reminded me that I complained about ear pain every flight to Switzerland and after Switzerland. He kept trying to get me to chew gum but my exact words “Im to tired to chew gum” lol… wow I regret that! I also, I had a stuffed up nose when we left Seattle.

dolfnlvr, Most of the doctors I work with know about my problem and they all tell me HISTORY, when it started, how it started, is so much more important that any of the testing. Especially, when its something can only be diagnosed by exclusion. I’ve decided if this doctor says yes he thinks its a PLF I will do the surgery. The thing that is holding me back is Im still having severe pain in my right ear where I had the ear tube…its been a month and this is totally not normal. The only thing the doctor can think of is there is serious nerve damage to my eardrum. Again, I would think that a clear indication of barotrauma.

sarahd, So true! Almost every doctor that told me I might have PLF didnt want to do the surgery… I think with it being such a controversial diagnosis they dont want judgement from the Otology community. Plus, most are not properly trained and I think that scares them. Have you had success with your treatment for MAV? Can I ask how long you’ve had your symptoms for?

I really appreciate all the comments. I feel so lost and alone in this mess. My friends and family try to be understanding but nobody know what it feels like to be a 24/7 rollercoaster. I feel like a completely different person. Some days I feel so angry, why is God allowing this to happen to me? Why isnt he answering my prayers?? Then I think back to all my friends and family in Zanzibar and think if this happened to them, they would have no options, they couldnt seek different medical opinions,they couldnt even get a simple tympanogram or VNG testing. Or I go to work where I work on the Oncology floor and see all these people battleing/dying from cancer and I realize eventhough this is truly horrible its not going to kill me. I try to use that as my natural anti-depressant.

Since, all the vestibular suppressants make my vertigo worse Im trying this homeopathic medicine call VertiFix by Natural Care and while its not relieving my symptoms I do feel at times that it takes the edge off. I’ve also added a herbal Migraine product just in case.

Have you ever been walking and truly thought there was an earthquake? Its happened to me a couple times but last night at work I didnt they were using a floor waxing machine which was vibrating the floor a bit and when I walked down the hall… I acutally yelled out EARTHQUAKE… haha… My co workers all got a laugh outta that :slight_smile:

26

I think Dr. Wacym sounds great and that is amazing that you got to speak to someone who had the surgery- how did you meet this person? What did they say about the surgery, recovery, etc.? How did they get the fistula in the first place?

I wouldn’t be hard on yourself about not chewing gum or about having a stuffy nose when flying…I think this would have happened even if you had chewed gum or had a perfectly clear nose. People fly every day with bad colds and they are fine- this is actually how my problem started- I got some type of middle ear barotrauma and over time I ended up having more issues- its a complicated story.

You are right about having this problem somewhere else- or not getting to see the right dr.- it is a nightmare that honestly no one else can understand unless you have had vertigo and the hopelessness that comes with this issue is indescribable. It’s something most people don’t even know about (myself included) until it happens to them- I had to get my dr. to spell out the word “vestibular” because I had never heard it before. I think you have a great dr. and that is phenomenal that you got to speak with one of his success stories.

Make sure you ask him how many of these surgeries he has done and how recently and how many per year. One of my drs. who had a great reputation believed that you had to have hearing loss to have any type of inner ear damage which is completely untrue. He also told me he did about 1 of these surgeries a year (I’m sure for this reason). Anyway, I happened to see a PT who said one of his patients had “fabulous” results after her surgery- my pt told me she got dizzy everytime she laughed, coughed, or sneezed…

As for me, I have had only partial success with my MAV treatment- nortriptiline dramatically helped my brain fog, constant rocking when sitting, motion sickness, dizziness with quick head movements, head pressure when I tip my head downward, etc. However, I still have visual issues and balance issues which for some reason nortrip didn’t touch. I had some partial success with lyrica but it’s benefit wore off pretty quickly. My balance issues have dramatically increased since the summer to the point where I can barely walk- no one knows why this is. Still trying mav meds and praying to god I can get this shit under control. It’s unclear whether I still have a fistula or else some other damage that is affecting my progress but no one really knows.

27

sarahd,

I was actually talking to one of the family members of one my patients at work. They’re at the hospital alot visiting and I was really sick that day and he stopped to ask me if everything was ok and I told he Ive been suffering from vertigo for 6 months. He told me had had the same problem. We swapped stories and he told me he had had an oval window fistula. His was from head trauma from accident. He said that although his symptoms went away right away he had severe tinnitus and some hearing loss for a few months but eventually the ringing calmed down and his hearing returned.

I have yet to talk to anyone or read any stories from people who suffered a PLF from barotrauma. If you dont mind, can you please tell me your story? You mentioned barotrauma as well and now Im really curious what our situations/symptoms might have in common. Do you ever feel as though your symptoms are so constant that you have trouble actually knowing for sure what makes them worse? Although, I know that straining, blowing my nose, trying to pop my ears, singing, bending down can make my vertigo worse but sometimes I do these things and I dont feel an escalation in symptoms.

The problem is some doctors feel all symptoms have to be textbook. From what I’ve learned from this is nothing vestibular related is ever textbook. The vestibular system is so complicated even most specialists dont fully understand it so I dont know how they expect every person to have the same symptoms. I was really leery of this possible PLF diagnosis until I read that case on Dr.Hains website… It was like reading my own story with small altercations. This person I talked to didnt really have the same symptoms as me. He mostly had imblance, tinnitus and cognitive issues/brain fog.

The only thing I know for sure that makes me worse is any medication.

Im not sure if you’ve heard of the House Ear Clinic. Apparentley they are world renowned. Top doctors in all things vestibular. They do something call Medical Records review. Where you send them your MR’s and a doctor will call you and descuss your situation. Unfortunately, it costs $250 but I have seriously considered doing this. People fly from over the world to see these doctors. Just a thought for another opinion if your not able to travel to see someone else.

28

Wow, that is pretty amazing luck to randomly meet someone with something so rare! I assume he had the surgery- how did it go- how long ago was it- did he get better?

I will send you a private message with my whole story. That is interesting that the things that you mention only make you dizzy sometimes? Do any of them make you dramatically worse, bring on spinning, etc.? So when this all first started in Oct. 2010, my symptoms were constant- but at the very beginning, bending down did make me feel worse temporarily. I have screwed up my balance 2 times from crying- my dr. didn’t know why- but this has only happened to me twice in the whole time I have had this and believe me I cry a lot- so I guess it really isn’t a reliable trigger for my symptoms. I’m sure you already know this but make sure you mention all of these situations as triggers to your dr.- in particular the singing/noises- that is called the tullio phenomenon and can be present with a fistula.

When you say you pop your ears, how do you actually do this? How often do you do this? If you do have a fistula, popping them can prevent the fistula from healing or even make it bigger- I would stop doing that until you see this new dr. It is also a good idea to be gentle when you blow your nose.

For me, most medications make my symptoms worse too. However for a long time taking xanax at night would really help me the next day- all symptoms were much better. I honestly don’t know if this is a “MAV” symptom or from a fistula- who really knows- I wouldn’t read too much into that. When you tried the migraine meds, how long did you take them for- it can take awhile for initial ramping up of symptoms to subside.

29

In Zanzibar I had rocking, bobbing, swaying… I was really tired but honestly it wasnt so bad I couldnt function except for the 1st week we were there. Then I realized my Neurontin was actually making my symptoms ten times worse so I stopped it. Eventhough, I was having vertigo I was still out enjoying my trip. I took boat rides, I was swimming in the Indian Ocean everday, I was walking the streets of Stonetown (very crowded). I would say it only affected me 30%. most days we would be out for a few hours and I would need to go back to our house lay down for awhile. At first I thought it was jet lagg, then I thought its the heat, which I do know contributed to my symtoms the whole time. Hello, Im from Seattle Im not used to heat & sunshine :). I really only went to the doctor in the first place because I started vomitting and my ear pain was so horrible. The last week/few days we were there I was feeling better.

When we left we flew in a very small plane from Zanzibar to Tanzania. Only a 30min plane ride but once we got to Tanzania I felt my vertigo returned. We then had a stop in Kenya, flew to Switzerland, I was dizzy, my ear was hurting, when we got to Zurich we got a sleep room (7hr layover) we then flew to Chicago and the sh** hit the fan. I was completely off balance, had to use a wheelchair, threw up, was having vertigo. We took our last flight to Seattle got home around 2am went to bed, woke up and went to straight to the ER where they admitted me because I couldnt stop puking, could barely stand. That was the middle of September. My symptoms stayed that way until the beginning of Decemeber. I look back and really dont know how I managed to survive and semi function and try VRT. The beginning of December I started to feel a little bit better, I started doing more, working my regular schedule…that when i could kinda start to tell what would make me worse, singing, elevators, bending down then in January boom symptoms are worse again just not as worse as in Septemeber. Or maybe their not worse and I’ve just become accustomed to them.

I tried Propanolol at 10mg only took it twice. I almost went to the ER it was so horrible, I could walk, I was rocking like I was on the ocean. The Amitriptyline I tried for 2 weeks. Every morning I woke up with worse vertigo. And I had been on Amitriptyline before on a much higher dose with no problems except it made me so tired. I tried to restart my Neurontin for a few days and i was walking into walls.

I plug my nose and blow out (Valsalva maneuver). Im not really suppose to do it anymore because of the patch over my eardrum but the dr had me to do it yesterday and I almost fell over. Sometimes this happens sometimes nothing happens…

30

Thanks for sharing your story Sarah!! Its crazy how everyone seems to have a long story :slight_smile: and has seen so many doctors. The vestibular system is such a complex system nobody seems to fully understand. I totally see how that pressure could have caused some damage to your ear. I hope you start to feel better soon. I know what you mean about the anxiety… I never had before this either. Its like one problem on top of another.

I’ve read how allergies can affect your inner ear, cause vestibular systems so Iam going today for allergy testing. Probably a shot in the dark but I figure it cant hurt… Plus I did have to take Zyrtec the entire month we were in Zanzibar which I normally never need. I dont want to leave any stone unturned. Next you might see me on TV for some prayer healing :slight_smile:

31

I am going to 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 perhaps in 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

32

I had this surgery! I ended up not having a fistula, so it didn’t help me.

33

Interesting. Do you get positional vertigo (I.e. when sleeping on a certain side) or experience worse symptoms due to changes in air pressure?

I’m sorry it didn’t work

34

That’s okay! I found something that did work!! :blush::+1: in 2012 I developed BPPV. But it goes away with the maneuver done in the doctors office as well as yoga. :raised_hands:

35

Also, I had HORRIBLE problems with air pressure. They made me feel like I was dropping from the Empire State Building.

36

That’s interesting. I probably don’t have a perilymph fistula, but I thought I’d try to get an expert’s opinion

37

I thought this was a possibility for my case as i’ve had a sensation of fluid in my middle ear many times, especially when getting out of bed in the morning or during the night, but an ENT surgeon recently told me:

  1. They are very rare indeed (much rarer than labs or MAV), and
  2. Many heal spontaneously, but process can take time (I’ve read physical ear trauma can take a couple of years to resolve itself?)
  3. Surgical intervention is known to be unreliable.
  4. There used to be a ‘fashion’/trend in ENT surgery to conduct these operations (read ‘over diagnosed/prescribed’) and as a result a lot of unnecessary procedures were carried out

Who knows though … every case is different …but it’s worth noting the OP finally got her surgery and it apparently worked out well, but if you dig around you will see posts from people post PLF surgery that apparently still have issues years on … so was it all just MAV after all?

http://www.mvertigo.org/t/it-wasnt-mav/7039

James

38

The first time I ever got this moving when I’m not sensation was after a plane ride and I had slight nystagmus with pressure. So that’s why Dr. Hain recommended it. But, please. Don’t take my advice. Each one of us is different.

39

Is PLF something like putting your fingers in your ear and your eyes move?
It comes and go, there’s hi times and nothing i feel it. What is the difference of PLF with Superior Canal Dehisence? my eyes move also when my dog barks and burping.

40

Dr again in Chicago is a good doctor for PLf. Wackym has a bad rep with some doctors… he also had moved to NJ