Thread: Fistula
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Old 01-18-2012, 10:01 PM   #1
CLAUDIAJO CLAUDIAJO is offline
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Join Date: Jan 2012
Location: MARYLAND, USA
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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 08:28 PM.

 
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