Perilymph Fistula anyone?

Hello,

So… I have been suffering from vertigo/imbalance since Aug 2012 after a 5 leg flight from the US to Zanzibar, Tanzania. It started with our 3rd layover in Switzerland where I started to experience right ear pain and vertigo. I was in Zanzibar for 1 month and was treated by the only ENT. He suspected barotrauma. My symptoms never let up. I flew back to the US, again 5 layovers and ended up admitted to the hospital the day after we landed. The Neurologist who admitted me (I know him because I work in the hospital) suspected a PLF. I was bedrest for 2 months, did 2 months of VRT, nothing helped. I’ve seen 2 ENTS, 2 Neurologists & 3 Neurotolgists. I’ve tried Betaserc, Flunarazine, Ativan, Valium, Meclizine, Propanolol, Amitriptyline, Zoloft, its all made my vertigo/imbalance worse.

The only thing left to do is surgical exploration for a PLF. I cant decide what to do and would love to speak with anyone who has had this surgery.

Thanks!

Can you tell us what your symptoms are? Do you have any hearing loss?

Hi,

Symptoms:
Vertigo- rotational, push/pull, falling backwards to the right
Imbalance- swaying, “drunk” wall, veering to the right
Ear pain/pressure/stabbing.Recently Had an ear tube had to be removed after 4 days due to sever pain
Cognitive problems/trouble concentrating/memory word problems
Nausea
No hearing loss
Extreme pain with pneumatic otoscope
Symptoms are constant, they just change in severity. They areworse at work. I use a computer, it makes my vertigo worse.I also have a constantly ringing phone on my desk & a loud dinging patient call light symptom. They are also worse at Church, loud live band & singing make me really off balance. I also recently had problems with bowel movements after pain meds gave me constipation. Basically every medication/ vestibular suppresents make it worse.

When they did the fistula test on you, did you get vertigo, or just the pain? It can be hard to diagnose because some drs think you have to have hearing loss in order to have a fistula- I don’t think you do. I am interested in this because I have seen 3 neurotologists about the possibility of a fistula myself.

Do you get dizzy when YOU sing, or just when hearing other people? Do you get noticeably dizzy when you strain when going to the bathroom? My Dr. told me that people with fistulas usually have reliable triggers- like every time you sing, you get dizzy, or every time you strain, you get dizzy- do you have anything like this?

Has a Dr. actually offered you an exploratory operation? Did you get a second opinion where someone agreed that it would be a good idea?

The problem is everytime Ive had the fistula. test I was already having the vertigo while they did the test & since the test is completely unreliable not having increased vertigo during it doesnt mean much. Mostly when I sing. Although I do have problems tolerating loud sounds. All the drs Ive seen have suggested a PLF but none have much experience with them. The dr Im seeing did offer today to do the surgery if thats what I want. Im just so nervous to do the surgery and its not a fistula but theother hand I dont want to suffer another 6 month’s if this I can be fixed. I have an appt in 3 weeks with a Neurotologist in Portland, Oregon who is experienced with PLFs and I will see what he thinks. I actually emailed hiim and he was kind enough to reply. He did say the PLFs are but are an entity under diagnosed.

I just dont know how else I could get on a plane totally health, get ear pain & vertigo. Then take 5 more flights a month later and be even worse.

The problem seems to be that most doctors are not experienced with PLFs…

It definitely is difficult because every dr. has a different idea of what the symptoms are, how to diagnose one, and when to do surgery on someone. I think that while you don’t have hearing loss (which is usually present), the fact that you get dizzy with certain sounds is a big key- esp. you singing. Do you know what ear this is happening in?

From what I have heard and read, it seems like the operation is fairly safe and fast and the risk of hearing loss from it is low. It sounds like this new Dr. will be a great source of info for you to decide about the operation. Make sure to ask him how many he diagnoses per year, what the surgery is like, what the typical outcome is, recovery time, risk of complications, etc.

I forgot to ask- do you get dizzy with any pressure changes? That is often present too in PLF.

From what I’ve read hearing loss doesnt always have to be present. When I mentioned yesterday to my dr that feel like I have brain damage because I cant think normal. He said he doesnt know why that is but if it is a fistula not everyone is going to have the exact symptoms. I think if this hadnt started and gotten worse after an internatinal flight with some many stops none of these drs would even entertain the idea of a fistula. I use the elevator at work with no problem. I only go up a couple floors no stops. But when I use the elevator at my drs, he’s on the 12th floor always multiple stops Im always dizzy when I get off. I also had severe vertigo when he put the ear tube in and took it out. I felt like the chair was bobbing up and down.

I know its my right ear. Thats where the pain started. The first doctor I saw in Zanzibar was an Audiologist. She diagnosed with otitis media with effusion. A few days later when I saw the ENT he said it was probably barotrauma. He had seen that before with visiters. The sad thing is they had 1 otoscope with a dimmed light and 1 tympanogram with dead batteries so they couldnt do any testing. Its a small island in Africa that dont have any of the testing we have here. My right ear continued to hurt the whole time we were there. Eventhough I was having vertigo there I still was out everyday doing things. It was more annoying than life stopping. The weird thing is the last few day there I was actually starting to feel better. When we flew back once we hit Chicago I could barely walk, we still hato fly to Seattle. Thats when I ended up in the hospital and bedridden for 2 months.

I did have a VNG/calorics and all that extenstive testing. It showed a 42% deficit on my LEFT ear. The 1st neurotologist diagnosed me with uncompensated VN. All my clinical testing Romberg/Fukada showed the deficit to be the right… I fall to right, I veer to right when I walk… so I have zero trust in these tests. The next to 2 Neurotologists I saw also said the testing was correct. 1 wanted me to redo it all, I chose not to. The dr Im seeing now didnt see the point in retesting.

I think Im probably most afraid of having the surgery and no fistula being found…then what? I dont know if I can emotionally/mentally handle the thought of this being permanant.

The dr Im going to see in Portland, Oregon has a youtube channel with 2 PLF patient videos pre & post op. http://www.youtube.com/v/(http://www.youtube.com/user/EarInformation#g/u)

I wonder if once you got to Africa, your fistula started to heal up, which is why you started feeling better at the end of your trip? And then all of your flights home might have re-opened it or maybe made it bigger? Have you improved at all since you got back to the US? Yea I have seen those videos, it sounds like you are going to see a great Dr.! Good luck I hope it is a good visit and keep us updated!

I had exploratory surgery for a suspected PLF but nothing was found, it turns out I had MAV.

The fact that preventative meds made you worse is a clear indicator that your condition is a chemical problem (MAV) and not a physical problem (PLF)

Hi Darren,

I was wondering, did your dr. tell you that about mav meds where if they make you feel worse, then you prob have mav? If you just had a fistula, would these meds not make you feel worse? It is also possible to have both things at the same time.

Also- how are you doing on the nortriptiline? I was wondering, have your symptoms been pretty consistent the whole time you have had this mess? Have they gotten any worse or better over time on their own?

I’ve seen 2 Neurologist who both didnt think I have MAV but had me try preventitves just to be sure. I couldnt even stand up after taking the Propanolol. The Amitrytyline threw my balance off, I was only taking 10mg. A few years ago I had been on Amitriptyline for almost a year for nerve damage and had no problems with it at 50mg dose. I also was on Gabapentin (nerve damage) when we left for Africa but once the vertigo started I stopped it because it made my worse.

I dont really see how barotrauma could have given me migraines??? If I hadnt had the barotrauma upon landing then I probably wont even consider a PLF either. Right when the plane landed in Switzerland I had pain in my right ear and started having vertigo. I dont see the connection between that and migraines… Do most MAV patients suffer from pain/pressure/sensitivity?

This is what I think happened… I developed pressure in my middle ear, my ear drum didnt perforate… I flew again and it forced the pressure into my inner ear causing the damage. 10 flight in 30 days is alot.Multiple doctors have told me that barotrauma is commonly mistaken for otitis media with effusion. The ENT in Africa didnt even want me to fly home.

I dont want to rush into the surgery that why Im going to see this specialist in Portland apparently he does some special testing for PLFs. If he agrees’ with the diagnosis that will make 3 doctors and I will procede with the surgery.

I found this on Dr.Hains website. Its practically identical to my situation minus the spinning and headaches and bilateral ear pain. Except this woman had 1 flight and I had 10.

A middle aged woman who complained of vertigo. This is in the context of some fluid in her right mastoid. Her symptoms began in January. She flew and was on a rather bumpy flight. She became ill and on the way back became even more ill. She was diagnosed as having fluid in her ear and was given steroids for two weeks. Since that time, she has had constant trouble with dizziness, spinning, tilting, rocking, nausea, jumping vision, lightheadedness, and a headache. She cannot focus on moving things, and she gets dizzy when she moves too much. Lying down relieves her dizziness.

Otologically, there are crackling noises on both sides, bilateral fullness, and bilateral ear pain. The right is worse than left.

On examination, under video Frenzel’s goggles, there was no spontaneous nystagmus, positional nystagmus, or vibration-induced nystagmus. Tullio’s test was negative for fistula. There was, however, some subjective vertigo with Valsalva. This is suggestive of a fistula.

She in fact did have a fistula.

When I read this I feel as though I wrote it myself.

Hi there–sorry to hear you are having such trouble. As you may know by now, it’s often difficult to figure out the cause of dizziness/vertigo and ear problems, because cases can be atypical, a LOT of the symptoms are common to MANY causes of dizziness (“brain fog,” visual discomfort, etc.), and even the biggest ear/neurology specialists can have different opinions. Tests, surgeries, and trials of medications are frequently not definitive or just confound the picture. Dang ears! Dang brains!! :slight_smile:

I had PLF surgery in 1999 after experiencing a sudden unilateral hearing loss and greatly increased dizziness when I sneezed hard one day. By the time I was referred to a neurotologist, it was more than four months after the event. He was the first one to suggest PLF. (Also in Portland, but we are probably not talking about the same doctor–mine was Dr. David F. Wilson; there was another doc in Portland who was well known for (over)diagnosing PLF–he died but still has followers, I think.)

Anyway, I was so happy to get a likely diagnosis and looked forward to the immediate improvement one expects (and should get) after PLF surgery. It didn’t happen, unfortunately. Dr. Wilson did not see a PLF during the surgery (which doesn’t necessarily rule it out) and despite his patching, I did not have a big improvement (which pretty much DOES rule it out).

Doctors never did figure out why I was dizzy. They ruled out everything and gave up on me. I finally, within the last couple of years, self-diagnosed myself with MAV. It all makes sense to me now, and there really is nothing left. Every doctor I’ve asked about it says they don’t think my dizziness is due to migraine, but I think it has to be.

As for my hearing loss, the best theory was that it was a stroke (blood clot) in my inner ear when I sneezed. I never got my hearing back, but fortunately my other ear is fine.

Your situation is a toughie. I think that usually PLF occurs from worse pressure changes than you get on an airplane, but I don’t know… the surgery is not difficult, but at the time I had it, I know that surgeons varied wildly in their post-op restrictions. I only had to avoid heavy lifting and straining for two weeks, whereas the “other” neurotologist required his patients to stay in bed for weeks or months afterwards and had a couple dozen other rules such as no drinking from straws, tons of other stuff that I can’t remember now.

Sarah gave you some great info and advice. I think you should definitely ask the new doc the questions she suggested, and also about post-op restrictions to see if you are ready to follow them. Since the problem started with a pressure-change situation and hasn’t resolved, you may always be left wondering, “is it or isn’t it a PLF”? Having the surgery, if your doc recommends it, should put that question to rest. No need to feel anxious about it.

Although in my case it turned out NOT to be a PLF, I felt the surgery was justified (because of the clear sudden occurrence of hearing loss and “new” dizziness at the exact time I sneezed–even though I did NOT have the typical PLF thing of greatly increased symptoms with pressure changes, and I didn’t seem nearly as dizzy as most people with PLF, and my hearing loss never fluctuated as is typical with PLF), and so did another big ear specialist in Portland whom I saw later (a neurologist). I was glad that at least someone had “explored” my ear and saw the little bones were all in place and did his best to rule out a PLF.

One thing I will say, I haven’t heard that ear pain is associated with PLF, but I might be wrong. My “research” and memories are all from a loooong time ago.

Good luck with your decision. It might be a long process to come to a diagnosis (or the most likely diagnosis) and find the best treatment, but perhaps the surgery will help, and no matter what happens, you are likely to get better in the future! Most people do eventually, one way or another!

Nancy

P.S. Where are you located? You aren’t FLYING to Portland, are you? :slight_smile:

Hi Nancy,

Do you feel like you got any worse after surgery? Have you had any luck with MAV meds? I remember messaging with Darren before and I think (correct me if I am wrong) that he got more dizzy initially after, but then it settled back to how it was pre-surgery, and he didn’t get any hearing loss from it.

Honestly if you have 3 specialists suggesting that you get the surgery, I think it sounds like a pretty good bet. I saw 3 neurotologists and they all said no to the surgery for me, but all for different reasons…the first one thought you had to get dizzy when you cough or sneeze in order to have a fistula, the second thought you HAD to having hearing loss in order to have one, and the third (and I think the best dr.) told me that people with fistulas have reliable things that trigger their dizziness every time (i.e. you singing, your work phone ringing, straining in the bathroom, riding up high floors in an elevator, etc.).

If you have been over to Dizzytimes, there was a former member named Moppie who got the surgery done and she made a full recovery- check out her posts. I also came across an interesting study that I believe was done by her dr.

hindawi.com/journals/ijol/2012/163691/

It is one of the best articles I have read about the subject- you should check it out. Good luck with everything and let us know how things go!

Hi Nancy,

No, no flying for me! :slight_smile: Luckly, Im in Seattle so its not to far of a drive. Thats not the dr Im seeing… Im seeing Dr.Wackym. There’s another doctor in PO that Ive been debating about seeing as well Dr. Sterling Hodgson… have you heard of him?

I really like the doctor Im seeing now but he was honest with me upfront and said he has only seen a few PLFs in his career and he only does surgeries, mostly hearing repair I believe. He doesnt typically manage medical patients but he kept me on because of the possible of PLF.

I just feel there has to be some kind of damage to my ear otherwise I wouldnt have had so much pain the entire time we were in Africa. I literally had to use a head wrap everytime we were in the car (no air conditioning) because any pressure hitting my ear was very painful. Im not sure if I mentioned that I had an ear tube put in my right ear last month and after 4 days I had to have to removed. I was in severe pain and lost some of my hearing. Thank the Lord, my hearing is improved. Thats another reason why Im so worried about the surgery.

I keep telling myself God wont give me more than I can handle but its gettings hard!

I keep thinking… couldnt I have just gotten Malaria instead??? :lol:

Thanks Sarahd!

I really trust the 1st doctor who brought it up… I work at the hospital with him…he’s a great neurologist and migraine specialist.

At times I feel like I’ve had these symptoms for so long I really dont remember what they are… does that make it sense? Its so constant at times Im not sure what really makes it worse. Its definitely gotten better since Decemeber…but its still worse than when I was in Zanzibar.

I read something online that said something along the lines of… the average vestibular patient will be 12 doctors and go 2 years without a proper diagnosis. How depressing is that?

Sarah: No, I did not get worse… a bit dizzier for a couple of days, I think, but I’m sure that was due to the anesthetic and the whole surgery thing. After that I really felt about the same. My weird bunch of symptoms that started that same summer/fall, and my dizziness that had started long before but only got weird and weirder after the sneezes–it’s all a long and complicated story, but basically no, the surgery neither helped nor hurt me in any way. Except that afterwards I felt sure I didn’t have a PLF; that question was settled in my mind and the minds of my doctors.

I think you are probably right about Darren, but my memory ain’t so good anymore! :slight_smile:

I skimmed the article you linked to but hope to read it more thoroughly at some point. Interesting stuff! Thank you.

I haven’t really tried much in the way of MAV (oops, now we say VM) meds. Doctors haven’t been very enthusiastic about the idea, and my symptoms aren’t that bad. I try to keep my sleep regular and not move around too much in the mornings, and I take Strattera which allows me to concentrate pretty normally through the constant “dizzyfog.” Love that drug!! So although I never FEEL normal, I FUNCTION quite well.

Malakaiz: I saw Dr. Hodgson just once, and that was to talk about possible Baha surgery (bone-anchored hearing aid). (Which I eventually got, but through Kaiser, for insurance reasons). I think Dr. Wackym is in the office where Dr. Black (the one who was famous but controversial for PLF diagnoses, the one who had the long and strict post-op protocol) used to be. Not sure about that.

In Seattle I have heard that Dr. Jay Rubinstein is the best neurotologist.

I totally understand your feeling that something must have damaged your ear during the flight. If your ear was fine before, and you know something happened during the flight, then it did! Just like I KNOW my hearing loss happened WHEN I sneezed… even though the first ENT I saw said he thought it wasn’t related. WHAT??? Just a coincidence that I had perfect hearing, no ear problems my whole life, but at the exact moment I sneezed it was just a COINCIDENCE that I lost my hearing!? Your knowledge of your own experience is irrefutable.

Hang in there and best of luck navigating your way through this! Just make the best decision you can, with what you know and feel, and go for it. Getting multiple opinions and doing plenty of research, as you’re doing, is very smart.

Good luck and please keep us posted!

After reading through all the posts on this forum. Im even more confused. Sometimes I feel like going to have a nervous breakdown from all the vertigo, ear pain, different doctors, different answers… I really start to think Im crazy :confused:

The doctor Im seeing in Portland is supposed to also be a MAV specialist as well so this gives me hope, if its not a PLF maybe he can still help me. He is in the same healthcare system as Dr. Black the one you had mentioned. Im not to worried about that about because in his email he stated “PLF’s are rare but can be an underdiagnosed entity” that gives me the feeling he doenst operate on just anyone… I also checked him out on some resources at my work and he is rated in the top 1% in the nation for Neurotology.

I heard Dr.Rubenstein is a brilliant as well unfortunately I went to the University of Washington Medical Center and saw Dr.Duckert. Not a fan. He didnt listen to a word a said, was only interested in what the previous doctor had wrote then refused to see me again unless I redid all my vestibular testing at UW. Then when I got his chart note for my records, he was incorrrect in everything he wrote but said that I was inconsistent with my volunteered history. No wonder this doctor had such bad reviews.