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PLF surgeon

#1

Help looking for PLF surgeon in the south. I live in a Louisiana. Not Dr Gianoli he doesn’t take insurance.

#2

There is tons of discussions on PLF here on this forum. Do not rush into surgery. Conservative treatment helps 90% according to Dr.Hain

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#3

Do we know a good all round ENT or Oto-neuro in that area?

Brooke, welcome to the forum, may we politely ask if have you been diagnosed with a PLF or just suspect you have one? Have you been suffering for long?

@Getbetter is on the money. Take things slowly. Ears usually heal themselves if you let them but tend to take their sweet time about it!!! :roll_eyes::slightly_smiling_face:

#4

I saw Gianoli in 2013. He diagnosed me with a definite Right fistula & possible Left. I could not continue care with him as we did not have the cash flow. I saw Wackym in 2015. He diagnosed me with a R fistula. Wackym said if I didn’t heal by now, i would need surgery bc it’s been so long. The issue with him is travel expenses & flights post surgery.
I’ve seen 3 other Neurotologist who would not give me any diagnose what so ever bc I have no hearing loss. But I’m certain I have a right fistula. I’ve been like this for 10 years. One of the docs who could not give me a diagnosis said based on rotational chair my equilibrium was like an 85 year old. I’m in my 30s.
I can’t go anymore. I have had passive suicide thoughts bc of the symptoms.
I’m new to this board. Ideally I’d like to find a good doctor driving distance that isn’t cash pay only.

#5

Hear anything about
Dr Joe Walter Kutz in Dallas anyone?!

#6

I have been there Passive suicidal so i sympathize with your situation. In the time since 2013 did any of the doctors put you on migraine preventatives and did you see any improvement on the meds ?

Also do you get dizzy when you bend or pick up heavy stuff ? Also did you try the pressure test where they blow pressurized air against the ear drum and look for nystagmus ?

There is an MRI in UCLA which is state of the art and i did my inner ear MRI there . This is a 3T (3 tesla) scanner and you can see the state of your inner ear fluids. If you have the insurance then you can try this. Dr.Hain recommended this for me.

#7

YEs been on Mav meds,
Yes when I bend over it’s worse but disequilibrium is 24/7 rocking swaying. I feel like I’m falling mainily to the R.
Gianoli had the most unbelievable testing. I was in testing for 4 days straight. I’m confident in his diagnosis

#8

No improvement on meds
No improvement with bed rest
I’ve been like this since 2009

#9

One more thing for you to consider…there is a new blood patch treatment for PLF

It is a minimally invasive procedure that can be performed in a doctors office. A doctor based out of UC Irvine performs it.

http://www.ucirvinehealth.org/medical-services/ear-nose-throat-ent/hearing-ear-disorders/perilymphatic-fistula

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#10

I feel for you. I’ve had just enough improvement to keep me sane. Chronic vestibular conditions are the pits!! :rage:

@lduet is from Louisiana I believe, not sure who she’s been seeing.

Did you experience ear/head trauma? Haven’t you noticed any improvement in all that time?

I had trauma to my left ear. The PLF presumably healed but I ended up with a diagnosis of MAV and Secondary Hydrops. Only the obvious trauma persuaded my current doctor to agree it was likely SH after a healed PLF. This has improved over the years but I’m still not 100%. Once you get Secondary Hydrops it can take years and years to calm down. If you dig into the anatomy you see why. Once you’ve had a significant leak of perilymph the fistula itself is only part of the problem: the resulting fluid imbalance is not something which resolves quickly and causes all kinds of risks for exacerbation and mischief.

Avoiding surgery was the right decision for me as the fluid leak in my injured ear has all but abated (but returns if I’m not careful with diet - this is the Hydrops behaving badly). This took about the same time as another PLF sufferer I saw on HealthBoards who got hers diving into a swimming pool: 3.5 years. I still have inner ear pressure though judging by various symptoms especially tinnitus. It’s a very gradual improvement.

The unilateral injury gave me slight symptoms on my good side: demonstrates to me there is some element of global fluid regulation that affects both ears. This has calmed down on my good side.

I’m not qualified to diagnose but we know a few things about PLF. I’m sure you are well versed but I will restate these things in any case:

  • Chronic PLF (especially bilateral or without trauma) is a contentious diagnosis so you may get resistance from some doctors to recommend surgery

  • There is no definitive, reliable objective clinical test available outside of research projects aside from surgical inspection when they usually patch in any case.

  • It’s often followed up by Secondary Hydrops which itself can then last years. I noticed a guy on Healthboards took about 10 years to recover!

  • Surgery might be worth a try but may not cure you (Hydrops!) and there is a risk you might worsen things. Someone posted on here about going deaf after a failed PLF patching. Make sure you see someone with an impecable record!!

  • a one off surgical solution can be a compelling, attractive idea but the success rate isn’t good (but the stats themselves are not reliable because there’s no reliable clinical test)

  • Seems to me most doctors fall into one camp or another. Some are convinced by migraine, others by PLF, yet more by Hydrops. Some tellingly have a curious bias to one diagnosis. Be careful.

Agree with @GetBetter: Since 2009 (and 2013) MRI has improved a lot and you may get additional info from a cutting edge 3T scan (downside is they aren’t cheap, apparently!)

#11

Hi Brooke,

I’m so sorry you’re having such a horrible experience. Have you tried to see Dr. Arriaga at the Culliccia Neurological Center? He has an office Uptown New Orleans on St. Charles as well as one on the West Bank. I think he even has an office in Baton Rouge. I had to go through a bunch of tests and get officially diagnosed before actually seeing him, but his associates and staff were all friendly and patient with me.

I refused medication, but I have been able to function as a pretty much normal person for the most part. I haven’t been to therapy in two years. Dr. Arriaga couldn’t believe I went through therapy without meds, but I that was my choice, and he understood.

If you want/need more info, or just someone to talk to, please feel free to reach out to me. And you’ll find a ton of support on this wonderful forum. Try to take it one day at a time.

If you can’t locate Dr. Arriaga let me know and I’ll doulbe check my spelling. He did take insurance when I went. I had crappy insurance, but it was better than nothing. I think a therapy session ran about $125 without insurance.

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