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Old 01-18-2012, 11:01 PM   #1
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CLAUDIAJO HB User
Fistula

Hello, I have been diagnosed with this condition and was recommended to consider for surgery. I am hoping to find more info on PLF surgery and the recovery and also if anyone knows of a reputable Otolaryngologist in this area.

A little bit of my background...January 2008 -I was doing sit ups w heavy weights and when I stood up - I was lightheaded, dry mouth, spinning dizziness, disoriented at the gym. I immediately went to the ER and was diagnosed with dehydration and to hydrate and get some rest. Alot of the symptoms resolved after a week, but daily I fight off a mild feeling like I am about to faint. To this day whenever I do anything that causes exertion (moderate walking anywhere 5 to 10 minutes....for ex. to a bldg or grocery shopping) or if the temperature in the air (indoors or outdoors) is warm 75 and up or cool 57 and down or if I go on a higher floor level, I get extreme fullness and pressure in my left ear then lightheaded which lead to symptoms of nausea, confusion, shortness of breath, fainting, brain fogginess, “woozy”, floating sensations, numbness and tingling in my right arm and right leg, extreme fatigue, having difficult time in large crowds, around loud noise (supersensitive). Then follows a tremendous head pressure from the base of my skull on the leftside and there’s pressure behind my eyes to the top of my head (not a headache) and then my balance goes off to the point that I can’t walk straight any longer(lightheadedness). Then my legs feel heavy to move. when these symptoms come and I have to find I place to sit until my heartrate goes back down. Symptoms also occur, if I am sitting in a room or outdoors with the temperature 75 degrees, I have to find a cool place or drink ice water until the symptoms goes away. And if I am sitting in a cool place 57 degrees or less, I do the opposite until the symptoms goes away. On some days as I am sitting out of nowhere, I get a LOUD popping noise which slowly decreases in my right ear. I had a host of tests… testing on my heart and thyroid, which came out perfect and normal. I have had a MRI and Brain Stem w/ and wo contrast, which came out perfect and fine. X-rays on my lungs which came out fine. Pretty much, every doctor (18 in all) that I have seen states my blood in all areas and blood pressure/blood sugar show that I am completely healthy. As health wise, I have always drank 64-72 ounces of water everyday and very cautious to what I eat and worked out very frequently. Now I can barely do anything.

However, Finally, as of Dec 2011, while another visit in the ER...a traveling nurse told me to go see another neuro doctor. I took her advice and had more brain test completed with the neuro dr., which came to be "normal" so then I was referred to a neurotologist. Now I am here....

The neurotologist referred me to take the following ear pressure tests:EQUITEST (E3), ELECTROCOCHLEOGRAPHY, VESTIBULAR EVOKED MYOGENIC POTENTIAL (VEMP), VESTIBULAR AUTOROTATION TEST, which all came back abnormal. So this gave him the diagnosis of "PSF". He believes I have a tear. Tomorrow, I am scheduled for a special CT SCAN on the temporal bone/middle ear (oblique views) for confirmation of a tear. So I hope it will help me to gain a proper diagnosed to determine if surgery is needed. I do feel very grateful for finding this site and any dr. recommendation and post-surgery feedback would be much appreciated.

Cheers, Claudia

Last edited by Administrator; 04-04-2013 at 09:28 PM.

 
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Old 03-07-2012, 08:41 AM   #2
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Re: Perilymph Fistula

Claudia, How did the CT turn out? I'm new to this, but I did not think PLF could be confirmed with CT. My understanding is that superior canal dehisence (SCDS) is confirmed with CT. I have a head CT scheduled for next week. I'm still just trying to learn all about what I may or may not have....

Thanks.

 
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Old 03-22-2012, 09:49 AM   #3
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Re: Perilymph Fistula

Quote:
Originally Posted by bollweevil View Post
Claudia, How did the CT turn out? I'm new to this, but I did not think PLF could be confirmed with CT. My understanding is that superior canal dehisence (SCDS) is confirmed with CT. I have a head CT scheduled for next week. I'm still just trying to learn all about what I may or may not have....

Thanks.
I had all testings done for plf and the ct does not confirm it..but it does confirm the SCDS which i had done also and that was negative. I just had plf surgery done on my left ear last week and i wish i can find somebody on here that has had the surgery done because i still have fullness in my ear and wondering if that is from the dissolvable packing that is in the middle ear. and i'm just off when i walk around i'm fine when i lay down with pillows prompt up. i cant do anything with my family i have 3 small kids that i cant even take care of my husband takes them to work i need help. I feel worse now after surgery then before surgery at least i was able to function I take clonozepam for the dizziness and it helps but now after surgery it works alittle for me, but i still cant drive or do anything.

 
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Old 03-25-2012, 09:51 AM   #4
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Re: Perilymph Fistula

Hi bollweevil - I hope all went well. You are correct, PLF could not be confirmed with the CT. However, I did receive the results of my superior canal dehisence (SCDS) from the CT. I also asked for a CD copy of the CT and to have a copy of the written results, which read everything was normal.

I can say that I am not really comfortable with the Dr. that I am seeing right now. But out of 15 DRs, he is the only one who made sense for what I am going through. When providing me the next steps, which is surgery..I feel he is comparing me (period of recovery) to all his other patients, which I really find unfair and leaves me questioning should I have him perform my surgery.

On my first visit, I asked him if he had a patient like me who couldn't walk for more than 10 minutes w/o getting lightheaded and super sensitive hearing (could hear a pin drop). He said no but PLF affects everyone differently. So this lead me to believe out of his 1000's patients that he stated he worked on .....based on my symptoms, I am a unique case even with him. Another thing, each time going back to him to receive my ear pressure results and CT results, with the CT results he didn't even have a copy of the results from the hospital. And gave me the response must not be serious since I don't have a copy of the results. Then with my ear pressure results, once flipping through some papers attached to my file. He closed my file and immediately looked at me and said .."Welp the test confirmed it" and said aren't you happy. And it was complete silence. I guess I was expecting more of a detailed response. So I asked him, which ear is the test stating that is giving me these problems....and he responded...well..you already know from other testings that you are healthy so what else could it be? Then he said well it's one more thing (CT scan) I can have done, but I know it won't show anything. So I asked again...what ear is the test showing giving me these problems? He finally answered correctly but by his face expression, I could tell he was very annoyed. Anyway, I am already emotionally and physically struggling to remain strong and I can't imagine the support he would give me if my recovery isn't as expected, which he says.."3 days I will be up and running again as norm".

Perhaps with his 1000s of patients, 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, he is not the dr for me, so I rather wait to find the right one.

So for now, I thank GOD that at least I have some direction to what I am up against. I am continuously in prayer, as I search for a 2nd opinion and search for people who have had this type of surgery to learn what to expect and ways to cope as I heal. As far as the DR, I know I will find one that will take their time out to talk to me and explain in a way I could understand.

I really wish you well on your journey for recovery and would love to hear how it's coming along. I will keep my journey updated as well .

take care
claudia

 
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Old 04-21-2012, 10:33 PM   #5
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Imbo HB User
Re: Perilymph Fistula

I had PLF surgery on one ear several years back and I don't think there is a lot you need to do post-op compared to any other time you go under general anesthesia. I suppose you could recommend complete bed rest and not do anything that might dislodge the fatty tissue graft, but my doc who is a very famous neuro-otologist surgeon had the opinion that there is not much you can do to either cause or prevent the patching to fail.

My recovery was fairly rapid and I immediately noticed that noise and pressure changes (such as passing trucks on the highway or the subway approaching) no longer bothered me. Beyond that it was just a slow improvement for a while helped by Epleys but then my inner ear issues started again. They are finally at bay for me which mostly seems to be result of first having anti-fungal medication and subsequently antihistamines to deal with previously undiagnosed allergies.

PLF is still very controversial in medical studies. You can't truly diagnose it without visual confirmation. Almost all cases get better at least for short term, which might be due to fluid pressure relief or the anesthetic. If it then gets worse, the answer is either you screwed up your fistula or you never had one in the first place.

Don't feel bad about blaming yourself. I know I screwed up my fistula with some very dumb choices (I blame the Internet). I had to deal with feeling helpless, depressed, useless, embarrassed, and worse, so do take care to get support on that. and do know in many cases it gets better and you will have a hard time recalling the miserable times.

 
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Old 05-02-2012, 10:38 AM   #6
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Re: Perilymph Fistula

I have been following this board, and specifically this thread for a while now, but this is my first post. I went scuba diving Aug of 2011 and have had vertigo every second since, and a whole mess of other symptoms including anxiety, stomach fullness/upset, visual instability, brain fog, and some extreme total body fatigue. Caffeine, alcohol and physical activity all really mess with me. Sadly, since I like my sports and beer.

I've had about every test under the sun and the only one that showed anything was the ENG and whatever other vestibular tests were done on that gauntlet of a day, which showed a definite weakness in my left ear. Since it happened after diving, PLF has been suspected all along, but as you all know, it takes a while to get beyond that point so they send you to every doctor they can think of. I feel like a test rat, and it can be really discouraging at times.

I'm yet to find a medicine that helps. In fact, most just make me feel dumb while leaving all the symptoms. Herbs, etc have also failed to accomplish anything. I've been doing vestibular rehab therapy for months and I swear it makes matters worse. It seems the next step is surgery. For what it is worth, I'm a 29 year old male, 5'10 & 155 lbs, always healthy and athletic.

For those that have had it, did you have endoscopic ear surgery, or did they have to fold your ear? I know the later doesn't sound fun to me, so I'm definitely going to look for someone skilled in the endoscopic method. Either way, I hear the recovery isn't as bad as you may think.

I truly feel for all of you that are dealing with this. It is certainly not an easy thing to deal with, and I've thought more than once this would be the death of me. LOL. Hopefully we can all help each other out and all come out to enjoy light at the end of the tunnel.

Last edited by marineman; 05-02-2012 at 10:39 AM.

 
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Old 05-02-2012, 03:04 PM   #7
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Re: Perilymph Fistula

just if i can jump in.. look for a nuero-otoligist who is skilled with PLF surgery. i know of a couple.. i myself am in canada but was willing to travel to the US for surgery. I go my PLF from swimming so it's certainly possible.

 
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Old 05-02-2012, 03:13 PM   #8
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Re: Perilymph Fistula

Quote:
Originally Posted by xtine04 View Post
just if i can jump in.. look for a nuero-otoligist who is skilled with PLF surgery. i know of a couple.. i myself am in canada but was willing to travel to the US for surgery. I go my PLF from swimming so it's certainly possible.
I made a mistake on a dive. I had trouble clearing and forced it. My ears were killing me for hours after, so I have little doubt that I did something to my ears. PLF seems like a very logical guess. I went down feeling fine, but came up dizzy and have been ever since. It is relentless!

Xtine, did you ever end up having surgery? I've seen your posts but can't remember.

 
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Old 05-02-2012, 04:01 PM   #9
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Re: Perilymph Fistula

Quote:
Originally Posted by marineman View Post
I made a mistake on a dive. I had trouble clearing and forced it. My ears were killing me for hours after, so I have little doubt that I did something to my ears. PLF seems like a very logical guess. I went down feeling fine, but came up dizzy and have been ever since. It is relentless!

Xtine, did you ever end up having surgery? I've seen your posts but can't remember.
well- i did but the dumbass dr. i saw locally (i'm in canada) didn't patch me.. long story as he basically screwed up. i didn't bother with it again since i thought just the op could help in wound healing.. which it did. i was consulting with a specialist in Lousiana who I was going to get the surgery thru.. he's well versed on PLFs and fixes many, many of those who were failed by other doctors or who didn't know what was wrong. but i became pregnant with our 3 child and luckily the pregnancy helped fix things.. i'm not 100% but much better these day.. hoping it sticks! if not, i am still ready to see the specialist there.. there is no way i can go back and live with what i had again... it's terrible and i never want to be so debilitated again.

where are you? in the US? these is a thread on scubaboards about PLFs too.

Last edited by xtine04; 05-02-2012 at 04:04 PM. Reason: typing and texting at the same time leads to errors

 
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Old 05-13-2012, 07:18 PM   #10
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Re: Perilymph Fistula

HI Shawna

You will be okay I had my left ear done 4-24-12 and now I am healing. It took me about 15 yrs to get closure. I can feel my packing moving forward in my ear. I was really off balance after surgery when driving.

Just follow your doctors instructions

Showtime4904

 
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Old 04-29-2013, 09:52 PM   #11
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Talking Re: Fistula

Last week I was in the middle of a fitness class when my ears started feeling like needing to pop. Then started some whistling low ringing and feeling like something in my ear. My gen Dr put me on steroids and then got in with ENT today. Think it may be a fistula? I am just curious about my hearing. It's gone for the moment in my right ear. Did hearing come back for others after surgery? Does vertigo nausea... All fun side affects from the ear issue get relief
How long is recovery time?
Thanks

Last edited by Administrator; 05-01-2013 at 06:09 PM.

 
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Old 04-30-2013, 05:43 PM   #12
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Re: Fistula

Hello Claudia here. I haven't gone for surgery, however hopefully someone on this post that has gone for surgery will respond. I just wanted to say to be sure to see a neurologist as this person specializes in the peripheral nerves involving the brain and ear. Sending lots of wishes your way that you will help you get to the bottom of what is causing this for you. ~Claudia~

 
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Old 04-30-2013, 09:39 PM   #13
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Re: Fistula

I am now getting an MRI in morning because they ruled out a tear in the ear. Dr. has now been throwing tumor out there as a new concern. So guess Fistula is not the problem. Maybe he's wrong. I'll know in a few days I guess.

 
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Old 04-30-2013, 09:46 PM   #14
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Re: Fistula

Quote:
Originally Posted by CLAUDIAJO View Post
Hello Claudia here. I haven't gone for surgery, however hopefully someone on this post that has gone for surgery will respond. I just wanted to say to be sure to see a neurologist as this person specializes in the peripheral nerves involving the brain and ear. Sending lots of wishes your way that you will help you get to the bottom of what is causing this for you. ~Claudia~
Thanks Claudia.
I am seeing an ENT now and have MRI. I'll have to check on your recommendations. I am fortunate to live close to some great facilities by the University of Virginia. At least I feel somewhat confident in that.
It's truly amazing how last week my hearing in one ear just faded out and the constant loud noise/hissing that has been going on. They said I have severe nerve damage. One day I was fine the next deaf in one ear!!

 
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Old 05-01-2013, 05:18 PM   #15
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Re: Fistula

Hello. Makes sense to ruled out everything. However, to my understanding it's very difficult to see a perlymph fistula in the ear due to the fact that it's a very very tiny tear. It's not until surgery that the Dr "MAY" see the leakage in the middle ear. Part of the reason why the surgery is considered an "exploratory". During the surgery the Dr. will stuff the middle ear w/ a small tissue graft. And as the patient recovers, if the patient respond positively to the surgery than a tear in the middle ear was the issue. If not, then it's something else causing the symptoms. I have gone to several Drs. for 2nd opinons and neither agreed with one another. Pretty much why I am in the limbo and continually pushing through my condition as I try to find a help on Diagnose. There is one place called Metropolitan Ear Group I would really like to try but I don't have the insurance. So I have to save funds.

I see that you are in the DMV area so maybe you would be interested in trying them out

One thing that has helped me to cope better is making sure all my Vitamin and Mineral levels esp Vitamin D, Iron, Potassium & Magnesium are adequate in addition to staying very very hydrated, eating light every 2-3 hours and PLENTY of sleep. I hope this helps and hope you get an answer soon. ~cheers Claudia~

Last edited by Administrator; 05-01-2013 at 06:11 PM.

 
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