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Old 04-14-2012, 05:33 PM   #1
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Join Date: Apr 2012
Location: Portland, Oregon USA
Posts: 2
bilateralPLF HB User
Unhappy recovering from Fistula Surgery

Perilymph fistulas are real and scary. I'm a 36-year-old male in the process of recovering from my first surgery on my right ear and will be doing the left ear repair on May 23, 2012.

My cause:
I got my 7th concussion 15 months ago while skiing. I was wearing a helmet - which actually might have been a big part of the problem. Helmets are rated for direct impact, not for how they disperse energy laterally through the rounded structure. I'm not advocating sports without protective gear. Just beware that they might not be as good as you think. Previous concussions were in high school back when they just said "you got your bell rung, you're fine."

My testing
I had over 20 MRIs, MRVs, MRAs, CTs, 3 lumbar punctures, a radionuclide cisternogram and all sorts of other test spanning 15 months and multiple states.

In the end, the Neurotologist was able to quickly and easily diagnose bi-lateral PLFs. I'll get into that later.

My symptoms
-no vertigo at all
-no nausea
-minor dizziness
-I was off balance
-I tasted metal in my mouth (CSF fluid)
-I smelled blood in my nose here and there, but never saw any
-extremely light sensitive
-saw black dancing spots in most lights
-tinnitus
-memory loss (long term and short term)
-24/7 headaches that I could never shake
-trouble concentrating
-stammering
-fits of rage
- ... and many more

My doctor
I'm fortunate enough to live in Portland, Oregon where Dr P. Ashley Wackym practices. He's a strong researcher and has pioneered many techniques in PLF repair. His office is full of the latest testing equipment. His bedside manner is fantastic. His staff is knowledgeable and well trained. He is always very busy and people fly to him from all over for their treatment.

Post op symptoms
-90% of all symptoms are gone
Dr Wackym did not put in packing that he will later remove. I do have quite loud tinnitus in my right ear (louder than before) but that's to be expected. My vision is normal again. I can concentrate again. I can speak clearly again. My life is back... other than being on strict bed rest.

My personal post op recommendations
o Get an overstuffed chair. You can’t be lower than a 20-30 degree angle when you sleep and you’ll be on bed rest for several weeks so just get the chair. Wedges on beds just make you slide down and that can be dangerous.
o Make sure the room you’re in is as dust free and germ free as possible. The germ free is obvious. The dust is so that you don’t ever sneeze or cough – which can undo the repair.
o Don’t even think about going on stairs or an elevator
o Definitely don’t try to open a can or bottle – in fact just rest and let other people take care of you.
o Plan to be on bed rest for at least 4 weeks. The type of bed rest I’m talking about is you only get up to go to the bathroom. That’s all you can get up for.
o Have someone near you all the time that can help you sit up in your chair, put on your socks, help you walk to the toilet, get you food and meds and the other things you’ll need.
o I set up a TV with a DVR connected to it and a computer with a wireless keyboard and mouse connected to it in front of my chair so that I would always have something to do.
o Gently clean dried blood at ear opening with q-tip – but not inside the ear at all. Fresh blood could continue to flow for up to 3 days post surgery
o Only soft foods for the first 2 days after surgery
o Chew gently on the side of your mouth opposite the surgery
o Silence can be deafening with the ringing in your ears. It may help to keep a very quiet white noise on
o Talk minimally and softly. Loud or even normal speaking volume can aggravate the ear
o Brush teeth gently and frequently to minimize the chance of bacteria entering the Eustachian tubes. Do NOT use an electric toothbrush - the vibration can be damaging
o While on bed rest, keep feet slowly wiggling to keep blood flow
- avoiding tensing muscles in the abdomen or core as this can put pressure on your ears
o Clenching fists gently can also help keep blood flowing
o Drink 64 oz of water daily
o Do not bear down AT ALL. If stool won't flow without bearing down, add milk of magnesia 1 x per day to your prescribed stool softener
o Ear will likely itch - avoid scratching it as this can disrupt the healing
o Avoid popping ears even though you may feel it is needed
o You may hear a faint, delayed echo of sound in the repaired ear. This is normal and should go away within a few days

If you think you have a PLF, but you're not sure
• You know how every doctor (general practitioner, neurologists, emergency room docs and others) all do the same concussion tests? For example, you have to touch their finger then touch your nose, and flip your hand over as fast as you can back and forth. It turns out there are simple tests like those for PLFs, but none of my doctors were doing them which caused more than a year to go by without an accurate diagnosis. In my opinion all doctors should conduct three simple PLF tests with every concussion patient. They don’t take much time and they don’t cost anything additional.
• Test #1: the doctor strikes a low frequency tuning fork and places it on each kneecap of the patient, one at a time. If the patient feels the vibration in his/her skull, there could be an inner ear problem. The test is then repeated on each elbow. When the tuning fork was placed on my left elbow, I had pain shoot into my forehead. This was a strong indicator of an inner ear problem. Not necessarily for sure a PLF since there are other inner ear problems that respond to this test. This test is different than the standard Webber or Rinne tests most docs learn in med school.
• Test #2: have the patient stand feet shoulder width apart, eyes open and see if they wobble at all. Then have the patient close his/her eyes and see if they wobble. In my case, I leaned forward, but thought I was standing straight up and down. Make sure you’re ready to catch the patient though – they could fall during this test due to imbalance.
• Test #3: again have the patient stand, this time with one foot behind the other touching toes to heel. Test this position with eyes open and closed. Again, be ready to catch the patient since their imbalance could make them fall.

Last edited by Administrator; 04-23-2012 at 10:05 PM.

 
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Old 04-23-2012, 07:00 PM   #2
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Join Date: Apr 2011
Location: Walden, NY USA
Posts: 4
teacher778 HB User
Re: Post-op Perilymphatic Fistula Surgery - Am I crazy or is this normal?

Thanks for your detailed information about your experience. It's invaluable for many of us that have problems no one else has or can relate to. I think that's one of the most frustrating parts of this whole terrible experience. Anyway, I wanted to ask you about the tinnitus. Right now mine is minimal and only really bothers me at night and in the morning. After the surgery you said that it was louder. Has it gone back to what it was prior to the surgery? Did you lose any hearing? My neurotologist said that if I have the procedure I would need to go see him a few days later to check the ear. Did you have to do that? Sorry for the barrage of questions, but you are the only person I have ever heard of that has had this and is willing to talk about it. I can tell you one thing, if I do have this done, I will be telling anyone that wants to listen! Good luck with the other ear, I hope you get your life back! Please let us know how it turns out. I will say a prayer for you! Blessings, John

 
Old 04-23-2012, 09:25 PM   #3
Inactive
(male)
 
Join Date: Apr 2012
Location: Portland, Oregon USA
Posts: 2
bilateralPLF HB User
Re: Post-op Perilymphatic Fistula Surgery - Am I crazy or is this normal?

Hey John-

Glad to be of help. The tinnitus is still above pre-op levels, but gets quieter everyday. I'm told this is to be expected. My doc doesn't do the 3-day follow up like many docs do. He does a 1 day post op before I'm discharged from the hospital. Then he does a 2-4 week post op in his office.

However, the post op mainly depends on how the surgery is done. For example, my doc doesn't ever go back in once the surgery is done. I know some docs go back in and remove some packing or some of the gel foam they put in. My doc never reopens it. Also, I know that docs use different types of tissue to pack the window. There are many ways to do this repair.

I'm so sorry you're going through all of this!

You say that you've passed all of the PLF tests. Have you done the three tests that I mentioned in my earlier post? If not, do them right away.

My recovery is going swimmingly and I can't wait to fix the left ear as well later in May.

Last edited by Administrator; 04-23-2012 at 10:02 PM.

 
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pinkone338 (06-30-2012)
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