I have been suffering from vertigo and oscillopsia for over 20 years after a head injury. The more active I am, the more symptomatic I am. Any action that requires any moderate head movements/jerks, especially gardening and car rides worsen my symptom. Sleeping on left side also worsen the symptom. I have been through multiple ENT/Neurotologists and no one has come up with any diagnosis. My symptoms disappeared for two weeks when I stopped doing any chores that required head jerks (including cooking and car rides). One of the expert neurologist suggested that I have left vestibular nerve compression, I do have 25% left vestibular loss (only on balance). In fact I have no auditory loss. Any thoughts?
There’s no equivalent of glaucoma in ear medicine because the pressures are too low to cause nerve damage. So nerve compression doesn’t sound right unless you have a Neuroma. Have you had an MRI to rule that out? However you may have a mechanical leak and Secondary Hydrops. Have you had VEMP tests or exploratory surgery?
Had multiple MRIs and CAT scans, including with dye. Everything is normal. Had it in Canada and in USA
Had every tests in an ENT text book other than exploratory surgery and other than 25% vestibular loss in left ear everything is normal
You can have SEH and fistulas without auditory impact. Unfortunately it comes down to putting up with symptoms and hoping it resolves or finding a surgeon willing to check for a leak. Generally the conservative approach is encouraged but you’ve been struggling for 20 years what is there left to try?
Neurotologists in Canada is refusing to do exploratory surgery as they don’t believe it is PLF.
They have given me every neuroleptics in the text book and it helps me to sleep. Other than that it has only ruined my liver and kidneys.
A neurologist would say that. It’s dogma and political. How do they know?!
I trust you have read Hains great website?:
These things do exist but the surgery is not reliable and probably complicated by SEH.
I have and have been assessed by one of his colleagues too.
Tricky. Then you are left with medical management (MAV protocol) or finding another ENT willing to carry out exploration.
Perhaps one day they will improve diagnosis and management of fistulas so it will be more effective and an easier choice.
The funny part is that I feel like airleak in my right ear when I bear down or when I do VRT (swishing sound). VRT makes my symptoms worse. Vestibular loss is in my left.
I have a fistula and my good ear gets symptoms. Basically once you get Hydrops in one ear it affects the other. Suspect this is because of some central regulation of pressure. Also the ears may share a congenital weakness.
Thanks for your feedback.
Pleasure. I get a bubbling leak very occasionally in my good ear too btw
Hi, sorry to hear that. I too have problems like you listed. I didn’t have a traumatic event though. I can’t imagine living with this for 20 years. I have everyday lightheaded wobbly dizzy head some headaches and I’m married to a doctor who has no clue what’s causing this. I’m doubtful that a migraine lasts day in and day out.
Stress defiantly triggers me. Do you write down everything to see a pattern?
jap4jesus, (that is a beautiful name) Vestibular paroxysmia guideline is out (link below ) and I think that could be my diagnosis. One of the doctors in Langone Medical Centre in NY had suggested that diagnosis two years ago, but couldn’t confirm it 100% in MRI as I couldn’t have Gadolinium for that MRI. After reviewing the article, I am sure that is 99% my diagnosis. Good luck!
Thanks for sending the link I started reading it. Without Jesus I could do nothing. Hopefully you know His saving Grace!