I had another MRI and MRA today that didn’t show anything new or different from the MRI that was done last October. (Which is a good thing).
Doctor said the malformation in the cerebellum that showed up in the first MRI was a chance finding. It hasn’t changed and they’re saying it’s not clinically significant. They don’t see any tumors or aneurysms and they have ruled out MS. I’ve been through 2 rounds of ENG&VNG vestibular testing which showed the same thing; that it’s central vertigo and there’s nothing wrong with the ear, inner ear or vestibular system.
The doctor is recommending vestibular therapy for 4-6 months. He said the therapy will make it worse before it gets better but if after 6 months the therapy doesn’t seem to be working then they’ll try some medicine that will suppress the balance. (Not exactly sure what that means but it’s definitely the last resort). The doctor never mentioned the MRA results so I’m guessing there were no issues noted.
I told the doctor that I’ve been feeling worse lately, especially the last 3 days. He said there just doesn’t seem to be anything physically wrong and that the therapy will retrain the balance system.
I asked the doctor if I should follow up with a neurologist and he said there really would be no point since there isn’t anything physically wrong. (Getting into a neurologist in my area is extremely difficult).
I’m having a hard time believing that I wake up one day and have such severe vertigo that won’t go away or get better. I made that comment to the doctor and he said “but it happens”.
I asked my primary care physician (different doctor than the one I saw today) to send a referral to Barrows in Phoenix, Arizona, which he did a month ago. I followed up with Barrows last week and they indicated they didn’t have a referral for me. (??) My primary care physician faxed it again last Friday so hopefully it gets into the correct channel this time. (I’m in Washington State so Arizona would be quite a journey, but I’m more than willing to travel to talk to a doctor that would be able to help me).
It seems to be getting worse. I have mild vertigo all the time and severe vertigo 4-6 days a week (can’t hardly walk across the room.). There doesn’t seem to be triggers, it’s just there all the time (like a bad roommate that won’t leave!)
To date, I still don’t have a diagnosis; just woke up one day 8 months ago and had
severe vertigo. No injury or illness, just a spinning head.
I also have tinnitus (left ear), pulsating tinnitus (left ear) roaring in ear (left), ear fullness (left), dizziness (all the time), vertigo, confusion, fatigue, left temporal tenderness, and headaches that come and go that range in severity. In the last week I’ve been having severe ear aches (left ear). Doctor looked at my left ear today and didn’t see any signs of infection (so I’m not sure what’s causing the ear ache but it’s painful and persistent!)
I’ll give the vestibular rehab a try. I have nothing to lose at this point. I still have a feeling it’s something more. Something that isn’t showing up in the tests or something that’s been overlooked.
I’m very frustrated!!