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Old 04-08-2008, 01:36 PM   #1
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Question Perilymph Fistula Sufferers? (and the joys of BPPV)

I have lurked on this board a while and the stuff on BPPV and MEP/Epleys has been amazingly valuable. I went thru 6 months of occasional BPPV and was still waiting to see a new neuro-otologist when I started to investigate "ear rocks" on a colleague's advice. All I can say is, if you have vertigo and haven't done Dix-Halpike or Epleys yet, do them now! Of course, not knowing what I was doing I made myself bed-ridden for two days with massive vertigo and vomiting, but it actually worked and I think I learned how to do them more effectively and without the violent reaction (thanks to Subs, Scottsman, et al. !!!) The advice on compensation/de-compensation was also great, if counter-intuitive. Who would think I'd feel less dizzy after working out on a rowing machine!

Anyways, BPPV was just an awful blip in 6 years of progressively Meniere's-like symptoms. However, I don't accept that I have Meniere's since I think I am a bit young (it started at 32 years old), have no family history of it, and the symptoms are HIGHLY effected by pressure, loud noises, touching my ear, jarring activities like mountain biking or racquet sports, and teeth clenching (night or day).

If there is anyone who has been successfully treated for a Perilymph Fistula (PLF), I would love to hear if you think the following history sounds like it. I am still 6 months away from an appointment with a neuro-otologist (I'm in Canada, eh) and my two previous ENTs have been less than useful (avoid salt, stress, lets do more ENGs and hearing tests to confirm that you really do have tinnitus)... So here goes a very long post. Skip to the bottom if you want to get to the punchline...

1) 1982? – noticed I have always had difficulty/inability equalizing pressure when underwater at 10ft or deeper and ear pain at deeper depth unbearable.

2) Mar. 2002 – After returning from Panama (where I skin dived) and descending in the airplane, it felt like my right ear never equalized. Fullness and some ringing in right ear. Would lose balance when I yawned or did Valsalva to equalize (e.g. walk into wall if yawning). Doctor prescribed nasal steroid for allergies but no noticeable effect.

3) April 2002 – Tinnitus louder but balance issues appear to be resolved. ENT in Hamilton does audiometry and ENG and notes subjective hearing loss but no nerve loss. Diagnoses Meniere’s and advises low salt diet and return in one year.

4) Sept 2003 – follow-up visit with ENT after tinnitus appears to recur following strenuous activity, stress, and/or jaw clenching (e.g. racquet sports, mountain biking, overwork/undersleep all seem to make tinnitus bad for a few days then it disappears). Tests and diagnosis from ENT are the same. ENT advises another follow-up one year later, but I move to Toronto and am unable to locate former ENT or have medical records transferred from the Hospital.

5) Sept. 2005 (possibly 2006?) – ENT in Toronto repeated tests and indicated there was now some sensoneural loss as well as hearing loss in right ear. Advised hydrops diet and health records indicate he prescribed diuretics, but I don’t recall him mentioning diuretics to me. Dr. is now a cosmetic surgeon in Beverly Hills.

6) Sept. 2007 – tinnitus and fullness had been minor except for a few days following exertion or stress. In September, tinnitus became much louder (and has been present ever since). This appeared to coincide with head cold and a bout of flu. Right sinus has felt congested ever since. Tried OTC decongestant including pseudoephedrine which appeared to bring on violent rotational vertigo. Even without decongestant rotational vertigo attacks roughly 1-2 days every two weeks.

7) Jan. 2008 – self-diagnose BPPV (positional vertigo) using Dix-Halpike maneuver. Repeated Epley maneuvers to reposition which caused rotational vertigo that kept me in bed approximately 30 hours, but then subsided. Read more about doing Epleys properly and the rotational vertigo was completely gone within 3 days and has not returned. I continue with Epleys approximately once per week or when feeling dizzy.

8) Feb. 2008 – MRI results are reported negative.
Noise of MRI was extremely uncomfortable (even with earplugs) and caused tinnitus and dizziness for several days.

9) April 2008 – Brain fog, dizziness, unsteadiness, tinnitus and fullness are bothersome and have occurred continuously since Sept 2007, but rotational vertigo and nausea have not recurred since starting Epley exercises in Jan. 2008. I now suspect a barotrauma in 2002 created a Perilymph Fistula because symptoms started with airplane and skin diving and worsen with jarring physical exertion and pressure changes (e.g. airplane travel, high-rise elevators, loud noises, truck going by on a two-lane highway, etc.)

 
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Old 04-08-2008, 04:35 PM   #2
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Re: Perilymph Fistula Sufferers? (and the joys of BPPV)

Are stories are quite similar......with my first episode dating back to 2004 while in Hawaii with my wife. I am 38 y.o. male........perfectly healthy, and was snorkeling and went approx. 12 feet down or so. Right when I cam to the surface, all hell broke loose. Vertigo, fogginess, tinnuitis, etc.

Lasted for about 6 weeks, then back to 100%.

Then in '05, went to Yellowstone, same thing. After pressure changes of the mountains and diving again, had another 5 week episode this time.....then back to 100%.

This last bout I was not so lucky. After an airplane trip, I have been dealing with this crap for the past 15 months. Brain fog, tinnitis, looked like I was looking at everything through a fishbowl! 24-7 , but different severity levels.

Busy stores, patterned carpets, concentrating in small meeting rooms were all very very difficult.

After a recent (January) trip to Vail for some fun, the severity level jacked right up and have miserable since.

Finally got my diagnosis (Post stapedectomy Perilymph Fistula) and had surgery 5 weeks ago.

The surgeon found a fracture starting at the apex of my previously implanted prostetic stapes. (This was done in '92) for hearing issues.

He lasered out the fracture and I am SLOWLY on the mend.

If you want to know more , just let me know.


Todd

 
Old 04-09-2008, 09:55 AM   #3
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Re: Perilymph Fistula Sufferers? (and the joys of BPPV)

Thanks Todd - very similar experiences with respect to skin diving, mountains, etc. I haven't had a stapedectomy but that would seem to make the Dx pretty clear according to the PLF stuff on Timothy Hain's site. From what I've read, many get better after the first surgery, but a few require multiple surgeries. I would think getting grafts to stick in such a delicate area might be hit or miss, but your laser surgery might be different.

Curious about what the docs suggested for your recovery period - bed rest? what to avoid, etc.? I did a really stupid thing the other day as one of my favorite Arizona bands was in town playing a small club and I didn't think to bring ear plugs -- tinnitus was already bad but welcome back dizziness! Hopefully if have surgery I will be a bit more sensible.

 
Old 04-09-2008, 02:58 PM   #4
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Re: Perilymph Fistula Sufferers? (and the joys of BPPV)

As far as recovery from surgery, the verdict is really out. Some docs are ultra conservative and suggest 2-3 months of absolute bed rest to let the graft heal.

Others (like my surgeon) opt for bed rest of 3 weeks and then slowly getting back into the world to let your brain re-callibrate.

I had two knocks against me........(1) a crack from the edge of the prosthetic stapes extending anterio-superior (per the op report).

Also, he removed the prosthesis completely.

I still feel "surgery" issues in my left ear......humming and pulsating like when you hit your thumb with a hammer.

I have to believe that this is what is slowing down my recovery.

Or maybe 5 1/2 weeks was just too optimisitic to be thinking I would be feeling 100%?

I am slooooowly getting back to work.....about 3-4 hours a day just to try and get into the flow of things again. This always makes me more foggy and fatigued.........which the doc said it would.

After not having a diagnosis for so long, I should be thrilled that he did, in fact, find a fracture at the oval window footplate.

But until I start feeling better, I am still being cynical about the whole thing.

todd

 
Old 05-20-2008, 05:23 PM   #5
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Re: Perilymph Fistula Sufferers? (and the joys of BPPV)

Hi IMHO,

I have a lot of your symptoms and also reside in the GTA. Just wondering how far you've gotten with any help. I just got a referral to Sunnybrook and I'm worried the wait will be a year before I see a specialist... even after the wait- I worry that they won't be able to fix my issue.

Last edited by moderator2; 05-20-2008 at 05:52 PM. Reason: that huge, huge quote!

 
Old 05-20-2008, 09:52 PM   #6
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Re: Perilymph Fistula Sufferers? (and the joys of BPPV)

IMBO,
the things that have triggered your symptoms parallel mine:
Trouble with snorkeling and clearing my ears, decending on flights (two of which put me in the hospital due to what I didn't know at the time was BPPV), problems with high altitude, difficulty with more extreme sports like skiing, Mtn. biking, and other jarring type activities, plus I have severe TMJ.

I have the same symptoms, and have had many, many tests...MRI of neck, brain, inner ear, fistula test, VNG, ENG, ECOG, blood work, eye exams, and met with a Neurologist. All exams are fine.

I've gotten rid (and hopefully not just temporary) of BPPV, it was a horrible case that has continued from last Oct. until about a month ago.

What helped was a diuretic. Did this not help you with your BPPV?
How long were you on it? It took me until my 2nd month to find any change. My ENT is keeping me on it for another 2 months.

If you do a fistula test, it will give information as to the likelihood of you having it. From there, I believe they do a CT scan to have a closer look and confirm.

Mine was negative, so I'm trusting I don't have PLF even with my symptoms as they have been and what triggered them.

What are you symptoms now primarily? Because it sounds like PLF, yet keep in mind when you have BPPV is seriously disrupts the vestibular system and wreaks havoc on how your eyes coordinate and balance is. It's too bad it's taking so long to see your new ENT, (what is it with the CAN specialists? The ones in Toronto and Montreal must service all of Canada) but hopefully they can test you for PLF. If your tests come back negative, perhaps a vestibular PT could help. I've had a bit of luck with mine, in that she helped me pull back the layers of all my symptoms to determine what was causing what, when all the tests come back fine.

You hate to have a test come back negative, but then again it's easier to treat what you know you have then deal with a crap shoot sometimes.

Sorry I didn't answer your question - no experience with PLF per say, but I wanted to jump in and share my experience with BPPV and the outcome.

be well
snh39

Last edited by moderator2; 05-21-2008 at 04:53 AM. Reason: the huge, huge quote!

 
Old 05-21-2008, 06:38 PM   #7
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Re: Perilymph Fistula Sufferers? (and the joys of BPPV)

@xtine - sorry to hear you're going thru a similar experience, but thx for the post. My last ENT is now a plastic surgeon in california (which might explain why I got the untreatable meniere's dx, come back in another year). I have a referral to another ENT at St. Mike's that was a 2 month wait, but also nagged my GP to refer me to the neuro-otologists (thanks to this bboard for the tip) at TGH. That was a six month wait list, but I called back a few times and even had the receptionist at my GP fax in my personally written medical history (my GP refused to do it) and reasons why I suspect PLF, and got into see the neuro-otologist for a initial visit a few weeks ago.

@snh - thanks for the post. The fistula and head shaking (quick version of a caloric test) tests and Dix-Hallpike/BPPV tests I most recently had were all negative but I've since had several multi-hour bouts of vertigo, some of which 'seemed' to be triggered by head position - I can't figure out the reason. I'm starting to suspect I haven't had the typical BPPV as the spinning can last many minutes or hours, although it did seem to get resolved with Epleys earlier this year.

I will have a CT scan next week and more balance and hearing/ecog/vemp tests the week after, but I'm not so optimistic any of these will be conclusive. Some research papers I've read on PLF show these tests were only positive for PLF in some of the cases where they visually confirmed PLF during surgery. If I recall correctly only about half the PLF cases had tested positively on the fistula test. That said, there is a lot of debate over how common PLF is and many docs that are skeptical about it. My neuro-otologist said he only has seen it in cases of head injury or prior stapedectomies, so part of me suspects I am latching onto my self-diagnosis of PLF out of false hope for a surgical fix.

Amazingly, after 6 years and two ENTs, I've never tried diuretics. My most recent ENT offered them, but I didn't have dizziness/vertigo at the time so I didn't see the point. I'll wait and see what my new docs suggest. I've tried low salt diet but couldn't stick to it until I started taking mineral supplements to eliminate the salt cravings. Things seem to get worse if I stop taking the minerals, but I'm not too sure.

@Todd - how is the recovery going? Has the VRT improved?

 
Old 05-25-2008, 06:30 PM   #8
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Re: Perilymph Fistula Sufferers? (and the joys of BPPV)

Hi IMBO,

i managed to get in touch with a specialist in London Ont.. and will be put on a waiting list to see him once my GP gives the referral. it's a long wait but he comes highly recommended. i guess the only other option is to wait to see someone at sunnybrook...

the CT you're getting.. is it of the inner ear? i had a sinus CT and head MRI and brain CT all normal. I really don't want to get zapped with anything again but will make an execption for a CT of the inner ear.

please keep me posted how things go. perhaps I can give you the name of the specialist incase things don't work out at st mikes.

can i ask- do you have any weird neuro issues? i have tremors and muscle twitches and sometimes have difficultly relating it all to a PLF.

hope to hear from you soon.

cheers,
christine

Last edited by moderator2; 05-25-2008 at 06:50 PM. Reason: disallowed website - posted contact info - please read the posting rules

 
Old 05-26-2008, 08:01 PM   #9
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Re: Perilymph Fistula Sufferers? (and the joys of BPPV)

Thanks for the reply Im.

I have improved.......whether it is VRT, time, or just getting back out there.

I am certainly not 100%, nor have I been since the surgery 12 weeks ago.

I am back at work full time though, which is pretty good.

I still have brain fog which fluctuates sporadically. Stores and busy places are still not the most pleasant places either

I just am trying to have faith that the fracture on the inner ear that he lasered out was the problem.......and he fixed it.

My injury (from snorkeling) occurred 4 years ago.......so I suspect that full recovery will just take time. (I pray!)

12 weeks seems like a long time.......... but I guess in the whole scheme of things, it is not that long.

Keep your fingers crossed for me,

Todd

 
Old 05-30-2008, 12:02 PM   #10
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Re: Perilymph Fistula Sufferers? (and the joys of BPPV)

@Xtine - I just had a CT scan of the temporal bone (contains the labyrinth and most of the other fun stuff in the middle/inner ear I think). I think my sinus might be involved, but I don't think they've looked at that and I've never had any fever, etc.). The CT scan seemed a joke after the horrible noise of the MRI, but hopefully the images will be useful. If I do have PLF as I think, it sounds like it's hard to see it with a CT. I haven't had any tremors per se, although I've always had fairly shaky muscles which seems to be helped by mineral supplements for electrolytes. The supplements also eliminated my prior salt cravings.

@Todd - Nice to hear things sound like they are progressing. I can relate to how it feels like such a long time. I have another 2 weeks before more tests and suspect I'll have a few more bouts of vertigo/nausea before then. It seems to be really affected by the barometer changing these days, but fortunately I have no more airplane flights this summer. Hope the brain fog improves. I'm finding espresso has been my savior, though I will probably get flamed for admitting to that on an inner ear board

 
Old 06-27-2008, 06:22 PM   #11
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Re: Perilymph Fistula Sufferers? (and the joys of BPPV)

Hi IMBO,

any updates on your CT? I'm still waiting to see a specialist so don't have any updates for myself as of yet.

I still have symptoms that come and go. I'm trying to follow a protocol to help with healing... I'm better but not 100%

Regards,
Christine

 
Old 07-04-2008, 08:12 PM   #12
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Re: Perilymph Fistula Sufferers? (and the joys of BPPV)

Hi Christine,

Got my results back from the CT scan. Wow, was that scan so much more pleasant than the MRI which got my head really spinning with all the loud noises (I would take better earplugs than the 50 cent ones they provide). Btw, I am finding life much better with some cheap silicon earplugs whenever there is much noise or wind.

Anyways, the hi-res CT scan of the temporal bone area did not indicate any dehiscience or abnormal canal sizes, but unfortunately it can't detect PLF in most cases. My neuro-otologist is skeptical of PLF, but willing to put me on the waiting list for an exploratory tympanotomy at my request. I think it is worth the risk as I can't think of any other reasonable explanation for my symptoms. Should have the surgery in a few weeks, I think. I seem to be much less dizzy now that I am avoiding sitting at a computer (although I'm not sure how long I can get away with working from home lying on a sofa with my laptop). I'm finding lying down and/or serc tablets have been very helpful when the dizzies and brain fog get better. Not sure the serc isn't a placebo, but at least it seems to be a convincing placebo for me.

 
Old 07-05-2008, 12:39 PM   #13
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Re: Perilymph Fistula Sufferers? (and the joys of BPPV)

guys, has any of you with PLF tried ventilation tubes?? Timothy Hain says on his site that they may be worth a try, and can help equalize the pressure, and ease down symptoms. The ENT can "test" you out by just putting a tiny hole in each ear drum, which heals in about 2 weeks. I tried this out, and although it was nice to have decreased pressure in both ears, it didn't do anything for my symptoms, which the doctors believe is "migraine" related, which unfortunately can ALSO cause ear fulliness, which further complicates diagnosis. But I'm curious if those of you with more causitive symptoms of PLF have tried this? The holes heal since they are so tiny, so whatever happens, it's only there for about 2 weeks.

Rich

 
Old 07-10-2008, 02:12 PM   #14
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Re: Perilymph Fistula Sufferers? (and the joys of BPPV)

Thanks, Rich for the ventilation tube idea. Haven't tried it myself but my inclination would be that if someone really has PLF, they need it patched rather than just trying to equalize the pressure more. Of course, I still don't understand all the mechanics fully. It makes sense that a ventilation tube would prevent pressure from building up. However, I'm quite sensitive to loud noises, pressure, wind, etc., so maybe a further hole would make this part even worse? Did have any such ill effects from your hole? Cheers

 
Old 07-10-2008, 07:55 PM   #15
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Re: Perilymph Fistula Sufferers? (and the joys of BPPV)

I can certainly appreciate your concerns. Dr. Hain, one of the foremost experts in the field, says that in PLF, ventilation tubes likely help because of the normalization of pressure. in general, however, PLF can be tough to diagnose because there is no one defined method of diagnosis, and it is often a diagnosis of exclusion, so if the ventilation tubes help, this could help further the diagnosis as ventilation tubes will not help the pressure problems in miniere's disease or for the unfortunate folks who have pressure build up as the result of migraine (like me). in fact, the doctor doesn't even need to do a full procedure with the tubes. All he does is put a tiny hole in each ear, which equalizes the pressure. Since there are no tubes in place, it is a NON permanent procedure, and heals in 2 weeks. I had this done recently, and both of mine healed in just under 2 weeks. It didn't help my dizziness at all, and just confirmed more than my ear problems are resulting from migraine, not an inner ear problem. So don't be concerned that once you do it, it's permenant. I doubt you could end up worse as a result. And if unfortunately you did, you would only have to put up with it for a short while before you healed. You could also opt to do it in your worse ear, and not the other if you are nervous. If you get better from this, it might indicate further that the PLF is there, and of course, as you mentioned, patching is the way to go. I agree.

No, I had no ill effects from my hole. Just a relief from the pressure for 2 weeks, which was nice.

Rich

 
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