Myoclonus symptoms

[rigbylu]

I’m almost three years post surgery. I’ve had no regrowth and my hearing has been stable since about seven months post op. I had zero word recognition post surgery, my hearing was significantly impacted but it did improve. I did develop tinnitus from the hearing loss. A few months ago I began experiencing a fluttering sensation in my ear accompanied by a clicking sound. When it began it was a few times a day. Has anyone developed middle ear myoclonus post surgery? My symptoms have worsened rapidly. I cannot sleep through it. I’m currently looking to find an ENT with experience in treating myoclonus.

[judyette]

I just logged in here to ask about somewhat similar symptoms.  However I've not had surgery, still on W&W.  Didn't know it was called myoclonus.  I've had the fluttering and clicking in my AN ear for a long time, and feelings of being stabbed in the ear, but it was intermittent.  I just figured it was something I'd have to learn to live with.  But it has gotten progressively worse over time, and now the fluttering is more like a bird in my ear than a moth (as I used to call it before), and it's more constant, and feels "pressurized".  But it's the pain that is now keeping me up at night.  I can no longer even sleep on that ear. It feels like I'm being constantly stabbed in the ear, plus my head hurts pretty badly above and behind the ear. It's even tender to the touch.  Not sure what to do.  Last MRI was Feb2021, so not even a year ago, and that showed stable small AN.  They had already seen on previous MRI's that it had grown an extension into the cochlear aqueduct, and there was no fundal cap, so dry canal. I was having issues with the gadolinium, so opted out of it last MRI.  That report just said "stable", with no dimensions listed. Two years before that, size was 6x4x4mm inside IAC, plus medial extension into cochlea. They only want to do the MRIs every 2 years now because AN has only grown very slowly.  I've also developed nystagmus (in the eye on that side) this fall, plus have had a few bouts of vertigo upon awakening, which none of my doctors want to nail down to any particular thing.  I'm interested to know what others who have these symptoms have done to alleviate them.

[CA Marti]

Hi rigbylu,

     First, congratulations on your successful surgery and having no regrow therapy. I did develop middle ear myoclonus after my stapedotomy surgery for otosclerosis. My situation is a bit different because I have two separate ear disorders, otosclerosis and an acoustic neuroma in the same ear. I don’t know if my tinnitus (myoclonus) was caused by my middle ear surgery or the acoustic neuroma on the same ear. I did have middle ear surgery, called a stapedotomy, on my right ear. Before my surgery I only had a soft high pitched tinnitus sound in my right ear. 7 weeks after the surgery on my right ear, I developed some new tinnitus sounds which could be myoclonus, it seems pretty likely it was caused by the surgery.  My neuro-otologist who specializes in tinnitus said he thought I did have stapedial myoclonus, but my surgeon said that was impossible due to the fact that the stapes didn’t exist anymore. In any case, I started hearing a tone that was unsteady in my right ear, but very soft. Sort of a Morse code like sound and rhythm, and occasionally I get a clicking. Then, a month later I developed a higher pitched and louder  fluttering (a more annoying tinnitus than the first Morse code one) which I think is coming from my left unoperated (good)ear.  These sounds is what led me to do an mri where I discovered the acoustic neuroma. I would guess that the new tinnitus sounds are from my middle ear surgery, but it’s possible they are from the acoustic neuroma? My hearing improved greatly in the middle registers so I’m not sure what caused the tinnitus. I still have the tinnitus sounds constantly. I haven’t found anything that helps it unfortunately but don’t want to mess with things more.
Best wishes,