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Old 10-04-2008, 06:54 PM   #1
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Unhappy Post-op Perilymphatic Fistula Surgery - Am I crazy or is this normal?

I had my first perilymphatic fisuta repair surgery one week ago. The first few days after surgeyr, I felt pretty good, all things considered. My ear was incredibly full with packing - the doc vacuumed it out mid-week and most of my hearing returned, though it still feels full and rings rather loudly. The last few days I've felt as bad (if not worse) than my original vertigho symptoms. I've tried to rest, and I've done little activity (none strenuous), but I continue to feel dizzy, foggy, and disoriented.... Is this normal? Is it possible that the patch came loose?

Here's the short version of my vertigo story. 15 months ago, I was water skiing on a lake - I crashed several times (though none were atypical crashes). Two days later I began to feel extremely dizzy and nauseous. I eventually got in to see a neurotologist - because I had not previous vertigo/dizziness experience, he diagnosed with me a PLF and told me to rest and expected that it would repair itself. This was on the tail end of the height of vertigo symptoms, so I went with his Dx. The symptom (dizziness, foggy thinking, nausea etc.) continued on for several month until I took my first plane ride - bad idea! After descent (and a few days of increase in vertigo symptoms), I went right back to my original level of misery. I finally got in to see an otarylonologist, and after several ENT tests and CT scans, he confirmed the fistula. Though no leakage showed up on the CT scans, my Doc agreed to do the fistual repair surgery in my right ear.

Maybe my doctor wasn't clear enough about recovery time, or symptoms that I should be expecting. Am I looking at weeks? Months? Any takers? Should I be concerned or is this normal?

 
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Old 10-05-2008, 06:55 AM   #2
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Re: Post-op Perilymphatic Fistula Surgery - Am I crazy or is this normal?

Hi Joel,

I can give you the benefits from my expereince, I don't know if this will be helpful or not! (I hope it is)

I had my PLF surgery about 3 months after conservative treatments were not working. I noticed improvements in my dizzy symptoms right away after surgery, but tinnitus and hearing did'nt get back to "normal" until all the packing dissolved (about the 6-7 weeks stage after surgery).

I am 99% better, just some tiny tinnitus.

I guess everyone is different, I would advice you to give it some more time before worrying to much (easier said then done), My doctor explained to me it can take upto 3 months to fully recover from the surgery, my doctor was amazed at my quick recovery.

Take it EASY, lots of taking it easy.

AJ

 
Old 10-05-2008, 09:25 AM   #3
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Re: Post-op Perilymphatic Fistula Surgery - Am I crazy or is this normal?

Hi Joel,

Way too early to get nervous about the outcome of the surgery.

I had surgery 2 1/2 weeks ago.......I can already tell this is going to be a marathon and not a sprint.

Mine was a little different (in that) I had to have a prostetic stapes put in as well as a PLF graft.

My doctor used vein from my arm , instead of skin from inside of my ear as the grafting material. Like AJ, he then packed it with a gelfoam, glue like material that helps to hold it in place.

I get my packing material removed on Tuesday of this week.

I do not know about you , but I am experiencing horrible ringing in my "non-operated" ear.

Apparently, this is called post surgery Hydrops........or in other words, fluid imbalance of your inner ears.

Until this normalizes, you will continue to not feel great. Ways to combat is are:

Low sodium diet
Diuretic (to help dry you up)
Eating at regual intervals (little amounts at more times during the day)

Also, keep in mind that the graft that he put in place is like tissue paper. It will take time to adhere to your inner ear and you really, really need to take it easy.

I don't know what AJ's post surgery protocol was........but whatever he did.........do the same!

It is not uncommon at all for this recovery to be non-linear.........just expect it up front.

My symptoms, although not as severe as others, were constant, 24-7:

Extreme difficulty in busy places.......ie. stores and restaurants.
motion intolerance
Foggy head
Pulsating in my bad ear.........like I could hear my heartbeat (if that makes sense?)
Bad fatigue
Yada yada yada

Let me know if you have any questions,

Todd

 
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Old 10-05-2008, 11:16 AM   #4
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Re: Post-op Perilymphatic Fistula Surgery - Am I crazy or is this normal?

My graft was taken from behind my ear and was connective tissue from the temporalis muscle.

Post surgery protocol - REST, Take it EASY and more taking it easy, I was also advised to do GENTLE walking for 10-15 mins at least 3 times a day, to keep leg muscle strength.

AVOID strenous activity, avoid blowing your nose, had to stop smoking to stop any "smokers cough", etc, etc.

Initially this was to be done for 4 weeks, but I stuck it out for 8 weeks. Luckily I had no hydrops issues (but this potential complication was discussed with my doctor). At the end of my 8 weeks of TAKING IT EASY - I was back to "normal".

All in all, I have found listening and actually doing the advice given to me by my doctor has gotten me through this and together with my doctor we have beaten the PLF.

Good Luck Joel & Good Luck Todd

Last edited by ajay66; 10-05-2008 at 11:22 AM.

 
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Old 10-05-2008, 03:51 PM   #5
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Re: Post-op Perilymphatic Fistula Surgery - Am I crazy or is this normal?

Todd and AJ -

thanks so much for the encouragement!

I know that resting (and not straining) is so important in the recovery process. I just wasn't prepared for how dizzy I was going to be! Because over the last year I have learned to cope with vertigo/imbalance, I had forgotten how dizzy i could actually be. it's very disconcerting, especially the fogginess of my thinking and sense of unreality at the worst points...

I guess it makes sense, with all the swelling and the surgical packing crammed in there, that I should have symptoms. So I guess the foam comes out over time? My doc already vacuumed out the foam that was reachable by the vacuum, but the rest is still packed in there. It feels so full!

I can't imagine what life could be like without vertigo - I'm cautiously excited....

 
Old 10-29-2008, 02:27 PM   #6
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Re: Post-op Perilymphatic Fistula Surgery - Am I crazy or is this normal?

Joel,

Please do let us know how you are doing if you see this message?

AJ

 
Old 10-30-2008, 12:05 PM   #7
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Re: Post-op Perilymphatic Fistula Surgery - Am I crazy or is this normal?

Thanks for asking! I'm at 5 weeks out from surgery and feeling probably 75% - which is great. The first few week post-op were pretty rough, and I did begin taking valium to cut down on the dizziness. As time has gone by, the swelling and foam have lessened and i'm back to where I was before surgery. Now i just have to wait a few more weeks to see if I progress back to a more "normal" state of being.

 
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Old 10-30-2008, 02:01 PM   #8
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Re: Post-op Perilymphatic Fistula Surgery - Am I crazy or is this normal?

75% better is great news. I can only imagine you will get even more better.

Sounds like things are on track and you are heading in the right direction.

Please do write when you are 100%.

Take it easy.

AJ

 
Old 01-31-2011, 06:01 PM   #9
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Re: Post-op Perilymphatic Fistula Surgery - Am I crazy or is this normal?

would love to hear how it went. I am 3rd day postop on plf repair for right ear. I was diagnosed with fistula in both ears and this is my first surgery since conservative method has failed. I am much more dizzy than before surgery and the room now tilts to the right wondering if anyone else expiriences more dizziness with chewing and swallowing? there is a squishy noise sometimes when I swallow along with rocking. dr. said I would be dizzy still since I have s fistula in the other ear as well..but was still hoping to feel better than this

 
Old 04-01-2011, 03:03 AM   #10
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Re: Post-op Perilymphatic Fistula Surgery - Am I crazy or is this normal?

Can someone please tell me how the Perilymphatic Fistula is diagnosed? What symptoms do people have apart from dizziness? It has been suggested that my light and sound sensitivity problems could be caused by a fistula. I have ongoing ear problems. Did you have infection with that also?

Any info would be a help.

Thanks

Gjoy

 
Old 04-20-2011, 04:48 PM   #11
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Re: Post-op Perilymphatic Fistula Surgery - Am I crazy or is this normal?

Hi Jingnui,
I am at the tale end of 'conservative measures' in hopes of healing what is most likely a PLF in both ears. I know surgery is next but I'm really concerned about the tinnitus getting worse after surgery. I've had a hard time dealing with the little bit I have now, I can't imagine it getting worse but I need to get my life back. I'm sure you know what I'm talking about. Have you heard of a technique called 'bloodpatch' being used for PLF? Thanks, John

 
Old 08-11-2011, 01:11 AM   #12
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Re: Post-op Perilymphatic Fistula Surgery - Am I crazy or is this normal?

Are there currently any people in the forum with confirmed PLF?

 
Old 08-13-2011, 06:10 PM   #13
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Re: Post-op Perilymphatic Fistula Surgery - Am I crazy or is this normal?

Quote:
Originally Posted by bindar View Post
Are there currently any people in the forum with confirmed PLF?
I don't know about anyone else but my doctor suspects a PLF with me. As you may or may not know, it's a very difficult diagnosis to make and many doctors apparently believe they don't exist.

 
Old 08-13-2011, 07:27 PM   #14
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Re: Post-op Perilymphatic Fistula Surgery - Am I crazy or is this normal?

I also have a suspected case. I will be speaking to my ENT on Monday.

 
Old 08-13-2011, 08:26 PM   #15
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Re: Post-op Perilymphatic Fistula Surgery - Am I crazy or is this normal?

Quote:
Originally Posted by bindar View Post
I also have a suspected case. I will be speaking to my ENT on Monday.
Can you tell me how you got it and what your symptoms are? Thanks, John

 
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