- Sep 27, 2016
- 9
- Tinnitus Since
- 2014
- Cause of Tinnitus
- Life? Who knows? Also have 24/7 pulsatile tinnitus, L ear.
Hello, new here and wanted to introduce myself!
I'm 49, married, kids, grandkids, live in New Orleans, and I'm a retired RN (due to work-related hip injury). I've had tinnitus in my left ear for a few years now, super low volume humming sound with the occasional "black out" of hearing followed by a few clicks and then it will "open up" again. Recently it started intermittently in my right and has gotten worse on the left. I don't remember exactly when I started with the pulsatile tinnitus in my left ear, perhaps in 2014?, but it was intermittent and usually only happened when I was going to bed and had my head turned a certain way.
Fast forward to 2015, it's a long story, but I was diagnosed with deep vein thrombosis (blood clot in the leg) and bilateral multiple pulmonary embolisms (blood clots in the lungs). In short, I damn near died. I was in heart failure, short of breath with any exertion, and just a mess. I was started on the blood thinner Eliquis which did its job nicely and I'm a little over a year out now and remain clot-free, heart has returned to baseline thankfully, breathing is a bit easier, but I'm having issues with post-thrombotic syndrome in my legs. I noticed not long after the clot diagnosis that the pulsing in my left ear was constant, and was getting louder. Since then it's been non-stop and is so loud sometimes that it interferes with conversation and I no longer hear the ringing, just have the occasional "black out" and then the clicking very faintly.
I sought care recently due to ear, jaw and eye pain on the left, had some imaging done, and I was diagnosed with a non-cancerous... something... in my head, near the left petrous apex. I've seen a neurosurgeon and a neurotologist, neither can clarify exactly what it is and the plan for now is to re-image me in 6 months to see if anything's changed. I have had a CT-A of my head, carotid doppler study, MRI w/ and w/o contrast and MRA of head and inner ear, CT of inner ear, CT and CT-A of my abdomen and pelvis (looking for clots), heart echo, vestibular testing, hearing testing. In addition to "The Marble" as I refer to it now, they diagnosed me with endolymphatic hydrops on the left but it's not know if it's Meniere's or secondary to The Marble. I also have hearing loss in the left ear and was told that I have a thin mastoid bone or something of that nature which may be why I hear the pulse... but if that's the case, why haven't I always heard it? Why now? I think something's up that they're missing. More questions to ask at the next visit with the neurotologist.
SO... that's my story so far. I'd heard about Whooshers but for the life of me cannot figure out that website. Is there a forum? I found the Facebook group and asked to join but the request just sat there for days and days, so... I dunno. Meanwhile, this pulsing is making me freakin' nuts and some days it's so loud I can barely stand it.
Anyway, hello!
I'm 49, married, kids, grandkids, live in New Orleans, and I'm a retired RN (due to work-related hip injury). I've had tinnitus in my left ear for a few years now, super low volume humming sound with the occasional "black out" of hearing followed by a few clicks and then it will "open up" again. Recently it started intermittently in my right and has gotten worse on the left. I don't remember exactly when I started with the pulsatile tinnitus in my left ear, perhaps in 2014?, but it was intermittent and usually only happened when I was going to bed and had my head turned a certain way.
Fast forward to 2015, it's a long story, but I was diagnosed with deep vein thrombosis (blood clot in the leg) and bilateral multiple pulmonary embolisms (blood clots in the lungs). In short, I damn near died. I was in heart failure, short of breath with any exertion, and just a mess. I was started on the blood thinner Eliquis which did its job nicely and I'm a little over a year out now and remain clot-free, heart has returned to baseline thankfully, breathing is a bit easier, but I'm having issues with post-thrombotic syndrome in my legs. I noticed not long after the clot diagnosis that the pulsing in my left ear was constant, and was getting louder. Since then it's been non-stop and is so loud sometimes that it interferes with conversation and I no longer hear the ringing, just have the occasional "black out" and then the clicking very faintly.
I sought care recently due to ear, jaw and eye pain on the left, had some imaging done, and I was diagnosed with a non-cancerous... something... in my head, near the left petrous apex. I've seen a neurosurgeon and a neurotologist, neither can clarify exactly what it is and the plan for now is to re-image me in 6 months to see if anything's changed. I have had a CT-A of my head, carotid doppler study, MRI w/ and w/o contrast and MRA of head and inner ear, CT of inner ear, CT and CT-A of my abdomen and pelvis (looking for clots), heart echo, vestibular testing, hearing testing. In addition to "The Marble" as I refer to it now, they diagnosed me with endolymphatic hydrops on the left but it's not know if it's Meniere's or secondary to The Marble. I also have hearing loss in the left ear and was told that I have a thin mastoid bone or something of that nature which may be why I hear the pulse... but if that's the case, why haven't I always heard it? Why now? I think something's up that they're missing. More questions to ask at the next visit with the neurotologist.
SO... that's my story so far. I'd heard about Whooshers but for the life of me cannot figure out that website. Is there a forum? I found the Facebook group and asked to join but the request just sat there for days and days, so... I dunno. Meanwhile, this pulsing is making me freakin' nuts and some days it's so loud I can barely stand it.
Anyway, hello!
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