Perilymph Fistula Sufferers — I Want to Hear Your Experience!

[Coyotesheaven]

Hello folks, long time no see .

Well, a year has gone by about since this diagnosis was seemingly ruled out, but now I am back to this idea given that my last ear doctor seemed incompetent and was handing out my former ear diagnosis (otic migraines) like candy to patients. He also lied about a serious FDA warning on a drug saying it didn't exist, so more reason not to trust him.

I still have possible signs of a fistula and things that, in my opinion, have only been described by fistula in the medical literature I have read. The ones that stick out the most is my never-ending sensitivity to pressure changes, especially to my outer ears (from wearing earplugs too tight, putting fingers in ears to prevent a loud noise), as well as activities that increase intracranial pressure (like, all of them, I can't strain at all or bend over or even sit down because it has an immediate pressure-feeling effect on my ears and head). I am still losing a bit of my hearing every day, no matter how careful I am, in both the high but especially the low frequencies.

I still get bouts of transient dizziness, transient vertigo, migraines, pass out feelings, and cognitive difficulties (starting to experience long term memory loss, having trouble speaking clearly at some points). I have never recovered from my depression from the firecracker accident more than 2 years ago, and have continued to get mind blowing levels of visual dissociation on a weekly basis. The symptom list is far more expansive, but those have been the major ones of late.

Some people have suggested a CSF leak before, possibly somewhere in my neck, and I know that a PLF is basically a small CSF leak. I'm scheduled for a spinal tap next week, and I am supposed I am a little more than afraid because of what's been happening to my ears 24/7.


So, that all aside, I would like to hear about your experiences with a PLF if applicable. Your symptom history, what caused the tear, how your symptoms changed/developed over the long term, and how you were diagnosed (especially without the talk of surgery).
I want to learn as much as I can; the ear doctors in my state are not competent enough to diagnose a fistula, and I can no longer travel anywhere because of growing disabilities.

Thanks so much for the help!

 

[Blue28]

Hi @Coyotesheaven,

Sorry to hear you're still suffering. I have read some of your other posts...and I can totally relate to what you're going through.

I'm currently in limbo...no doctor knows what's going on with my ears (they don't seem to care either). I have many symptoms similar to you, tinnitus, both high and low pitched, hearing loss and hyperacusis. I also get pains/migraines in the back of my head. All of this started after an acoustic trauma just over a year ago. I can't really offer any advice, but just thought I'd let you know you're not alone I hope you get some answers (and relief) very soon.

 

[GregCA]

I'm currently in limbo...no doctor knows what's going on with my ears (they don't seem to care either). I have many symptoms similar to you, tinnitus, both high and low pitched, hearing loss and hyperacusis.

I don't understand the mystery (and how they don't know what's going on). You claim yourself that you've been victim of an acoustic trauma. That in itself is enough to explain the hearing loss and tinnitus.
What am I missing?

 

[Ambassador]

I'm concerned hearing about the number of "incompetent" doctors there seem to be. I never see a doc without first asking everybody I know who they like. Everybody knows a nurse or a friend of a nurse and that's another good place to ask for a recommendation. Then, Google the doc, see where they went to school, what certifications they hold, online reviews, etc.. With the access we have of endless information there's no reason anyone needs to see an "incompetent" doc. I always remind myself to remember tinnitus is just one of hundreds or thousands of "incurable" conditions, sometimes we have to prepare ourselves for the fact that there is no "answer" just different ways to help us cope.

 

[Blue28]

I don't understand the mystery (and how they don't know what's going on). You claim yourself that you've been victim of an acoustic trauma. That in itself is enough to explain the hearing loss and tinnitus.
What am I missing?

You're missing nothing...my point is that I have suffered due to the trauma I had (caused by a wax removal procedure), and that the doctors I have seen disregard my ongoing suffering as I only have slight hearing loss up to 8kh...but having a moderately severe loss above 8khz is "normal and not important". So I just have to get on with it, despite my tinnitus screaming 24/7, the fear of further HL and the endless ear fullness which is wearing me down.

@Ambassador I totally agree, but all countries are not equal in the number of doctors practicing and the transparency of their reputation. If you are not lucky enough to have someone recommended then you have little to go on.

 

[Coyotesheaven]

@Blue28

I am sorry you are also going through some of the same problems. By chance to your problems happen to be confined your ears and do you only experience migraines?
I'm not an expert, but your (more restricted than mine) symptoms seem to indicate an endogenous problem with your inner ear, possibly a result of damage to the vestibular apparatus caused by the accoustic trauma. The inner ear has quite an intimate relationship with the rest of the brain and nervous system, and if something is really whack there and the balance/localization signals aren't being sent or processed properly, other parts of the brain can start to malfunction (cognitive problems, migraines, headaches, etc). Unfortunately, most ent's and neurotologists are not well aware of this; you would need to find the top of the top neurotologist, or someone who actively researches these topics to get an accurate answer.
I wish I knew who to recommend but I don't at this point as I don't remember who it was who was doing the research regarding this. The doctor I saw last year was supposedly one of the leading persons advocating for the connection between migraines and inner ear problems, but clearly, he was not seeing the whole picture.

I have a number of neurological issues, including disabilities, that more likely than not indicate a problem that is not rooted in my inner ears; I only (casually, at this point) consider a fistula because that, as a CSF leak, can have a profound impact on the nervous system as opposed some to other inner ear diseases.
I also have mild autism, which will likely mean I have a congenital predisposition (or a manifested reality), of central nervous system malfunctions or poor neurologic coping mechanisms once physical damage to some aspect of my nervous system occurs.

 

[Telis]

Mine was caused by barotrauma, same symptoms as you describe. I did the valsalva method repeatedly after lifting weights, ruptured something by doing this too forcefully. After taking antibiotic ear drops following the injury (I assume they maybe drained into somewhere they shouldn't have with the tear) I lost a lot of hearing And symptoms were worsened. Still to this day, when I bend over I feel like my ears are going to explode, screaming high pitch tinnitus noises, along with low whooshing sounds, dizziness, fullnes (especially with pressure change), pain, hyperacusis etc etc. Ent just kinda shrugged his shoulders and said I wouldn't be able to walk if I had a fistula and my low frequency hearing would fluctuate more. I don't know, I kind of give up and and just try and live with it. Doctors seem so clueless.