Hi All-
I just got back from the new ENT. He says he is fairly certain it is not Menieres. He says what he believes I have is a perilymph fistula. He says this because:
-hearing is a little less on the left ear than the right.
-Pressure (fistula) test- negative on the right ear and slightly positive on the left side.
-A problem with the balance problem and associated problem with the visual system, he said we see this very commonly in the fluid system in the inner ear.
-He says it is not uncommon to have problems with bright lights and a lot of activity going on around you with this. Also the brain fog is a symptom of this.
He says that all of these are symptoms of a distorted gravity problem.
He scheduled a Lasix test for this Thursday, this supposedly be able to see if I have endolymph hydrops
I am not sure how I feel about this. I had thought for sure I was onto something with MAV. When I asked him about it, he did not say absolutely no, but he said if it was migraine it would be a nerve connection problem.
I would really appreciate some advice, what would you all do? I’ve tried to do a little research on this and there is not much out there at all. Besides surgery (which I am not excited about at all), what kind of treatment is there?
I just don’t see how all of my symptoms can be attributed to this. From what I understand perilymph fistula is a very rare thing; I was reading a previous post from last week from someone who had seen the same MD I saw today and got the same Dx. I know coincidences happen, however is PLF something so rare that this unbelievably coincidental?
What would you all do if you were in my shoes? Thanks so much everyone! Be well and stay strong!
Remembering more of my conversation with the MD, he said MAV was “the flavor of the week”.
What I would do is take the tests the ENT orders and see what they show. If they don’t show anything conclusive I would get a second opinion, from a neurologist or neurotologist. I would certainly get a second opinion if the suggested treatment is anything hard core like surgery.
Vic
I will do the test he recommends, absolutely, but it will be a long time and a second and third opinion before I have any surgery. I’m a bit confused about the fistula test he did. He said there was a slight reaction to the left ear but I am wondering if the only reason is because I said I felt slightly off balance during it, and even that is debatable. The audiologist kept on saying, “Are you dizzy, are you dizzy?” and the test was done with me standing up with my eyes closed so of course me, with bad balance, felt a bit off balance.
Regardless, after the battery of tests they did today I’m more off balance and have a headache. Such is life.
I believe they also tried to induce BPPV by having me lie down and have my head hang down over the end of the table. Am I right in assuming that I don’t have that because I did not have any eye movement, even though I felt a great deal of pressure, lightheaded and head fullness when he did it?
Have a great night everyone!
If MAV is “flavor of the week,” that all depends on your perspective. Perilymph fistula is “flavor of the week” all the time for a certain small subset of ENTs. ENTs generally are surgeons, they like to find a reason to do surgery. And the PLF True Believer Docs seem to be ones who DON’T really believe in MAV. MAV is anyway more the purview of neurologists; a lot of ENTs seem to know and care little about it.
Some ENTs are notorious for overdiagnosing PLF. Sounds like maybe you got one of them. These docs are looked down on by mainstream ENTs. DISCLAIMER: I know this was the case a decade ago, but I haven’t been reading any new research, so I don’t know for sure that this is still true.
The problem is that PLF symptoms are bascially pretty much the same as with any other vestibular disorder and with MAV. All of them give you dizziness, unsteadiness, brain fog, motion sensitivity, you name it.
Unless a person had a sudden, clear onset of dizziness and maybe hearing loss caused by some traumatic event involving extreme straining or big pressure change in the ear (diving, sneezing, childbirth, etc.), I would be VERRRRRRY suspicious of a PLF diagnosis.
Good for you for your idea of getting a second and even third opinion before proceeding with any surgery.
I did have the PLF surgery but it wasn’t by one of the PLF-happy docs. I think mine was justified because I had a sudden, severe hearing loss in one ear and onset of much worse dizziness when I sneezed hard one day. My doc did not see a PLF and I did not improve after surgery. (But, unlike poor Darren on the board here, I did not get any worse.)
Good luck and please do get another opinion! 
Nancy
I had PLF surgery 4 weeks ago. My neurotologist and I agreed that there was sufficient evidence to do surgery. I had valsalva induced vertigo, and the fistula pressure test gave me BAD spinning vertigo after testing the left ear. And she believed that my other symptoms were more akin to PLF than migraine. Additionally, I have no personal or family history of migraine, or any type of headache. My surgeon didnt see a leak during surgery, but this is very common and a well documented occurrence in academic literature. My symptoms actually became a lot more severe after surgery, and they are still a little worse than before surgery. From my research, I can see that the recovery from PLF surgery is often a long one, it may take 3 months before seeing good results. My doctor and I are still not sure if I have a PLF, but it was worth trying because I had sufficient evidence.
I would suggest an attempt at treating MAV before PLF. If the several MAV treatments dont work, then consider PLF. I tried a few MAV meds without any luck, but I regret that I didnt try a few more just to be sure.
Hello,
I remember reading a paper by a nurse who worked in a balance centre. I am paraphrasing but in it she basically said that a balance/dizzy disorder shouldn’t be treated by an ENT, they are specialists in the middle and outer ear, nose and throat. She went on to say that neuro otologists do a further four years training in to the inner ear. It makes sense that you would want to see someone who spends all day consulting with dizzy people and builds up a wealth of experience in differentiating between the different conditions, which can often look very similar. I was first seen by ENTs who were very unhelpful, then found out about neuro otology and went there, then was eventually referred on to neurology when I struggled to find the right drug, as they have the most experience of dealing with migraine preventatives etc…
Often I would advise someone to see a neurologist if they suspected MAV. In your case I’d be inclined to get a recommendation for a really good neuro otologist, someone known to be conversant with MAV, there will be plenty of people on this board who can suggest someone. They will be in a good position to assess your perilymph fistula diagnosis and consider all the other possible causes too. Unless there was really conclusive evidence to suggest a fistula, I’d personally want to explore some migraine preventatives before letting someone operate on me.
H
Can I just also add that Prof Halmagyi told me point blank (Steve Rauch excluded here because we know he gets what MAV is) at a lecture that ENTs love to cut things out. Give them a scalpel and they love to carve up the Christmas turkey basically. And so I would most definitely not let anyone near my ear with a knife unless you were CERTAIN it was not a migraine-based illness and had seeked a second opinion from a neurologist who has some idea about MAV.
Best … Scott
Thanks everyone for your replies. I stand corrected, the MD I saw yesterday was an otolaryngologist, not sure if it is the same as an ENT. He has me scheduled for a “Lasix Test”. I have a question, when tthey did the fistula pressure test, one of the steps was that they had me stand, close my eyes, use the pressure machine in each ear and ask me if I felt dizzy at all. Well, to begin with I have a balance/lightheaded problem so of course when I stand and close my eyes I get a bit more off balance. Is my verbal response what they base their findings on or are their recordings of something? I know my eye movements were not recorded. When asked if I felt dizzy with the test, my reply was “I think maybe a little”, I cetainly did not get the spins, feel like falling or anything like that, just perhaps a vague sense of a very slight increase in my symptoms, and I am not sure that is even true and may be explained because I I was standing with my eyes closed?. I can’t see that this is what has ailed me my entire life. The MD said that activity, weight lifting and valaava manuever can cause this, however I had the most symptom free years of my life when I was goling to the gym daily for about 4 years. Also, I know there are no hard statistics but how rare is PLF? I ask this because I coincidentally found another person on this site who had seen the same MD 1 week before me and was dx’d with the same condition with the same vague results. He also kind of dismissed the idea of MAV for her too. Do diuretics work well for this condition or is surgery the only answer? Thank you again for your kindness, I can’t tell you how grateful I am for your advice and guidance.
Cartney
Hello,
An otolaryngologist is an ENT. Timothy C Hain is one of the best specialists when it comes to dizziness disorders- here is his info on perilymph fistulas.
dizziness-and-balance.com/di … stula.html
He says that fistulas are very rare compared to menieres. Seeing as menieres is already quite a rare condition, I’m assuming they are, therefore, very rare indeed.
Hope this helps,
H
No one knows how common PLF truly is. But I personally think its a little more common than what some doctors think.
The test you describe is the fistula pressure test. My doctors did the test while I was laying down, and it enduced bad vertigo both times. The first time, there was a 5-10 second delay for the vertigo, it actually happened after the doctor stopped the test. But I never have spontaneous vertigo, so I was sure that it was connected to the test.
I do find it odd that you felt best during your years of going to the gym, this would be helpful for MAV.
Some doctors give lengthy periods of bedrest (6 weeks) to heal a PLF, but that is better for patients with a recent injury. Surgery is the most effective way for treating this condition. Some new research has shown that an experimental blood patch (blood injected into the middle ear space) can help close a fistula.
Note: the following definitions apply to the US; terminology may be different in other countries. Even in the US, the distinction between the terms “oto-neurology” and “neuro-otology” is not necessarily observed consistently.
An ENT (ear, nose, and throat doctor) is the same as an otolaryngologist. They have varying degrees of knowledge about the inner ear. Some might specialize in sinus, voice issues, etc.
An otologist is an ENT who specializes in the ear generally.
A neuro-otologist (also spelled neurotologist) is an ENT who has completed several years of extra training (above general ENT training) in the INNER ear and its connections to the brain. They can get a certificate in “otology/neurotology.” They specialize in hearing loss, dizziness/vertigo/balance problems, tinnitus, and skull-base surgery, such as for acoustic neuroma (benign inner-ear tumor).
An oto-neurologist is a NEUROLOGIST (not ENT) who specializes in dizziness and balance problems. They don’t do surgery but will refer you to a neuro-otologist for surgery if needed. There aren’t too many otoneurologists. Dr. Tim Hain in Chicago is one example. I don’t think they get any kind of certificate; I think they do some kind of fellowship program somewhere to educate themselves specifically about dizziness. Oto-neurologists are most likely to know about MAV, although I’m sure some neurotologists are knowledgeable about it, too (as Scott pointed out). It all depends on the doc’s interests and expsoure to/belief in certain ideas.
Dr. Robb gives a list of US otoneurologists on his page, although I’m guessing that even in this list, the range of knowledge and interest in MAV differs.
robbmd.com/links.php?sectionid=2804
Re the fistula test, I did have my eye movements recorded, while sitting in a chair (I think it was the rotary chair setup, though they didn’t spin the chair, just hooked me and had me watch the red dots or whatever it was). I had to dig up my records to confirm this, as it was a long time ago. The report says, “Tests are evaluated based on objective measures (horizontal and vertical eye movement recordings) and subjective reports (symptoms) associated with the application of pressure to the patient’s external ear canals.” The test was negative on both counts–no nystagmus (eye movements) and no additional dizziness when they applied the pressure.
(Of course, that test was done a year after the surgery, as it was ordered by the oto-neurologist I saw after the neuro-otologist who did the surgery had finished up with me. But I think it would have been negative even before the surgery; I feel sure I didn’t have a PLF after all.)
If you did not have your eye movements recorded during the fistula test, and they were trying to “coach” you into being dizzy, I wonder how reliable your test was!
Closing my eyes while standing, or hanging my head off a table, also give me a somewhat more lightheaded, dizzy, though not spinning sensation (except for a few limited episodes of BPPV I had in the early 2000s). I think anyone who’s chronically dizzy will have at least a mild increase in symptoms under those circumstances. It doesn’t prove anything.
Motion-provoked symptoms seem almost universal among dizzy people. By itself, increased dizziness from activity, maybe even Valsalva, doesn’t seem like good evidence for a PLF, unless maybe it’s a very prominent and sudden increase.
The only real treatments for PLF (again, I am working from my lay “research” of many years ago) are bedrest with avoidance of any straining/pressure activities, with hopes the PLF will heal itself, or surgery. Surgery is the “gold standard” treatment, and the “gold standard” diagnosis is when the doctor observes a leakage during surgery and the patient has a big improvement post-op. I haven’t heard of diuretics being used for PLF (but again, I’m not up to date).
Nancy
(Hi Hannah!