Perilymph Fistula Surgery

[ronniex]

Hey, ronniex, thanks for the additional information.

Middle ear fluid or infection don't cause a fistula, but if there is a pre-existing weakness in the wall between the middle and inner ear, a sudden change in pressure could conceivably cause a leak. However, this is typically due to a sudden spike in INNER ear pressure, as might be seen with lifting or straining, as opposed to slight MIDDLE ear pressure changes, as might be seen with flying. Again, the whole concept of the spontaneous PLF (without a history of straining or trauma) is somewhat controversial.

Mike

Thanks for your reply Dr Mike.

I hope my problem is due to middle-ear trauma and nothing else, but it still doesn't explain the sudden dizziness and "leak sensation" that occurred on the plane, or ongoing problems with head movement. I had no symptoms at all prior to the flights - I was completely healthy. The tube blockage occurred on the flight and as I understand, when this happens it can abnormally pressure the inner ear. There are several reported cases of flight attendants developing ear fistulas when flying with nasal congestion. This is why they state "never fly" when you have a cold".

Anyway, so what valuable lessons have a learned from this sorry turn of events?

1. Never fly if you feel any way unhealthy. Though the risk is small, you could end up with serious problems.

2. Go to doctors when you have any unusual symptoms.

Ronniex

 

[ronniex]

Oh, by the way, thanks for the info about BVP. I did actually try some of those manouvers and it did seem to help.

 

[doctormike]

Oh, by the way, thanks for the info about BVP. I did actually try some of those manouvers and it did seem to help.

Sure..! There are vestibular rehab specialists who might be able to work with you if you are still having symptoms...

Best,

Mike

 

[xtine]

Hi Ronniex,

Thanks for writing in... sounds like a PLF was possible in your case.

As for me, I had the surgery. It didn't go exactly as planned as I asked the dr. to patch me no matter what he saw during my op. Thru my research and discusstions with Doctors who specialize in PLFs, I found that most PLFs are not visable but most PLF sufferers do respond to a surgical patch post-op.

When the Dr. opened up my ear, he didn't see a PLF and therefore didn't patch me even tho we both agreed that he would. I guess I was the victim of a long day and last surgery and he just forgot! it was dreadful and horrible to go thru. the dr. offered to do the op again and this time with a patch but i have delayed thus far.

the surgery made me much, much worse. turns out he valsavled me many times to look for a leak. i was awful for a few weeks after and back to my old symptoms. dizziness was the least of it as i also lose CSF when it gets bad.

strangely enough, and perhpas the surgery acted as some sort of blood patch but i did improve in the months following. i was almost back to 'normal' execpt i caught a bad cold about a month back and i think all the coughing and nose blowing set me back again. i am however very greatful that i don't lose any CSF thru my leak or at least not enough to make my low CSF symptoms present.

i have been in touch with a dr. who is very familar with PLFs and CSF leaks. he reviewed my history, scans and list of symptoms and wants to see him. unfortantly he is out of the country (i am in canada) and i have no insurance so i have to pay for his treatment. he was the only dr. to find low CSF on my MRI and he does suspect a PLF in my case. I was preparing to visit him when i found out i am expecting my 3rd child. so, needless to say, things will have to be put off until i have this baby.

my US Dr. suggested that I get a c-section to avoid pushing and further damange to my ear so i will be deliverying via c-section in May 2010.

i have improved a great deal but i pay for it thru hearing loss. i still continue to follow many percautions such as not lifting, straining etc... twisting my neck and using my right arm seem to make things much worse. like you, i'm okay if i don't do much but i'm tired of living life with so many restrictions. i fear having this baby and not being able to take care of him/her. i am happy there is at least someone out there who can help me... i hope hope and pray that things go okay. i still hold out hope that i can heal on my own if i continue to rest. i was so close and my body is trying to heal but it always seems that something happens to set me back.

if you did suspect a PLF in your case I would just be weary of it and try not to over do it on the ear pressure. if you suspect you have it again, go on immediate rest and it should heal quick. i have a few Internet friends with PLF who live in the UK and have had to fly or cruise to the US to see this PLF specliast. seems they were having issues trying to get a diagnoisis in the UK. you are right and that most heal on their own- i suspect mine hasn't for a few reasons and one being i have low iron which seems to slow down the wound healing process.

cheers,
christine

 

[teacher778]

Hi Xtine,
I've been looking on line for information about PLF surgery and your thread came up when I typed it into a search engine. I hope you get this because I am having the exact same symptoms you were having before the surgery. I'm interested to see how you are doing now, 2 years later. I want my life back and I'm starting to think that it may not happen. I've had problems (just like yours) subsequent to lifting weights and although I have't been nauseous and my dizziness is not quite as bad as yours, every time I lift something more than 10 lbs, I get the 'shhhh' sound and everything starts getting fuzzy. Also, my middle ear pressure changes and I feel lousy. I haven't been able to pick up my kids or lift anything around the house. I want to be better again. I hope you get this and are feeling better. I know how horrible it is and I can't imagine having a baby to take care of with this problem.

 

[claudiaj]

Hello ALL, I am not a scuba diver, however, I stumbled across this message board when searching "Perilymph Fistula Surgery". I have been diagnosed with this condition and was recommended to consider for surgery. As the above member teacher778 mentioned, I am hoping to find more info on PLF surgery and the recovery.

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. 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.

Finally, as of Dec 2011, while another visit in the ER...a traveling nurse told me to go see a 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. Next week, 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 ..thanks for sharing your experiences....and last any post-surgery feedback would be much appreciated. Cheers, Claudia

 

[greggaway]

Hi Claudia,

Please keep us posted.

I'm not scuba diver either but I believe suffered a PLF a few days ago whilst using the Vasalva technique too forcefully when going down a mountain with a cold.

I currently have mild hearing loss, tinnitus and a constant feeling of lightheadedness which is driving me crazy.

Going through several ENTs at the moment but none of them have clearly established it could be PLF although if I look at all the symptoms I can relate to most of them.

Keep me posted on what your tests come back with. I'll do the same on my side. I'm not looking forward to getting an op but that may be the only way to fix the problem.

Cheers,

Greg

 

[claudiaj]

Hi Greg

I will do. Also, I found a site helpful with a variety of ppl sharing their experiences with PLF or post surgery. Possible Perilymph fistula from blowing nose? - Inner Ear Disorders Message Board - HealthBoards

 

[NDP]

Greg, Claudia, How are you doing? I too am not a diver, but my little boy may have a PLF. Have you two gotten any answers? I am finding recovery from PLF to be slow, non-linear and requiring the utmost patience. Not easy at all! My little guy's symptoms include dizzy spells, nausea, ear pain, occasional head aches, visual sensitivity and difficulty concentrating/doing schoolwork. Symptoms worse with fatigue.

Look forward to hearing your updates.

Nicole

 

[claudiaj]

Hi there NDP. Yes, I have gotten an answer. which narrowed down to PLF surgery. To my understanding, PLF can heal on its own and if not then surgery is requried. I am still debating the surgery due to the part of removing the ear drum. I just associate the ear drum with my ability to hear. So as of now...I am truly in limbo with the surgery. What I have learned with this type of injury...it's very unique and it's best to rule out all other major body organs like brain, spine...etc. And the best type of doctor to see is an "Otologist/Otolaryngology" so this would be a good start. I have read that ppl who have gotten the surgery feels 100% better, however with any surgery its a pro and a con. So I am really weighing the options. I hoped that helped and best wishes! Also, here's a good site to visit and read more info on PLF http://thedizzylounge.com/souimplemachinesforum/