Hi, everyone I have been suffering from 24/7 desequilibrium for 3 years, I have seen many specialist and they don’t find anything wrong, apparently I suffer from vestibular migraine. How can I difference between vestibular migraine and superior canal deshicence due to the symptoms can be very similar, I appreciate your feedbacks. Thank u
You can get a temporal bone CT scan to rule out SCDS…i did and it checked out ok…Do you hear your eye balls move ? Weird question but in SCDS case you will
One difference is: it can involve highly invasive surgery that can go very very wrong. I would suggest trying to stabilise your condition conservatively if at all possible.
I also got the CT scan done to rule it out. To me it was easy and worth it to rule it out. I never heard anything like my eyeballs moving, which is one of the symptoms, but my neurologist wanted to rule out every other possible explanation.
SCDS was what my hearing specialist initially diagnosed me with. Guy was a complete idiot, he literally said to me “I just got back from a conference where I learned about SCDS - I think you have that. You’ll probably need brain surgery”
This was devastating to me to hear that I’d have to have my head opened up. So I did some research. What I found is that if you have SCDS, you’ll definitely know it. Every movement and sound will reverberate in your head. Some people say they can even hear their eyes moving. Footsteps will sound like kick drums.
As others have stated, if you want 100% assurance that you don’t have SCDS a CT scan will do the trick
@BHMaloney I’m so sorry you had to go through that diagnosis, I hate doctors that say “you’ll have to do this.” Like there’s no other option or chance that it’s something else. Right before Christmas maybe 5 years ago I was told I had the Chiari Malformation & would probably need skull surgery, opening the skull and touching the brain. I had my neurosurgeon consult Dec 27, so it completely ruined my Christmas. I couldn’t get it off my mind to save myself. Turned out the surgeon didn’t think I had it, the MRI scans were read incorrectly. I was grateful not to have it but the scare was horrible. Last year I got more scans for other reasons that also definitely confirmed I didn’t have Chiari malformation.
Funny you mentioned Christmas time - my specialist told me that the week before Christmas as well
I’m bald, so I vividly remember asking my family and friends if a bald dude with a massive head scar would be off-putting. Completely ruined my Christmas as well, I was devastated. Medical practitioners can be very ignorant sometimes
@BHMaloney Wow, sorry to hear about the bad timing for you as well. I’ve found I definitely respond better to doctors with a good bedside manner.
Hey guys thanks for replying on this comment, very helpful I can’t hear any sound besides my ringing in the ear so I don’t think I have that condition, however talking about bad specialist, the first one who saw me said that I had Ménière disease which it does not fit with my symptoms, that visit to that specialist affected me a lot psychologically then I was seen by other specialist and they did not think my condition was Ménière.
Most specialists tend to be out of their element when it comes to chronic dizziness I’ve found. Where it’s not easy to diagnose and has no specific cause a lot of them just resort to what they’re familiar with (Meniere’s or Vestibular Neuritis)
@turnitaround has a lot of opinions on the over diagnosis of Menieres
I have indeed …
Meniere’s is indeed scary! Takes the bravest person to deal with that.
As everyone knows I think there is a close relationship between SEH & MAV, though the latter may have a different cause …
Hi. I wanted to weigh in on the SCDS vs MAV topic. I have both.
First off, you can have SCDS (superior canal dehiscence syndrome) and not hear your eyes move. My SCDS showed up in my right ear first and I have never heard my eyes move in that ear. I did have the extensive surgery (a mid-fossa repair) for that ear and it did help. It did not cure it - as in get rid of every symptom but it did help. Five years later I began to hear my eyes move in my left ear. The CT shows very thin bone - no dehiscence yet but I definitely have multiple symptoms on that side. I don’t know if I will have surgery on that side. It is extensive and requires a fair amount of recovery. Right now I live with the symptoms and manage my life with respect to them.
A CT scan will show if you have either a dehiscence or thin bone in the area. You have to go to a place that is familiar with the exact kind of CT scan to do for SCDS - it is a very specific scan. Some places they will say they do it but they don’t. I know because I’ve been through that.
I would recommend that you check out the website vestibular.org. It is for an organization called VEDA and they have many articles on vestibular issues, including SCDS and MAV. They can also help you find a good physician, near you if possible, to help you sort this out whether you have SCDS or something else.
Vestibular disorders can be tricky to diagnose and not all doctors are up to speed yet on how invasive MAV can be. (It took me six years to get a correct diagnosis.) You will need patience and perseverance in getting to the bottom of your disequilibrium. It can be helpful to keep a journal of your symptoms - how mild or severe they are, what you ate, what the weather is doing, stress level, any exercise you can do. That will help you see if there are any patterns and it will help a doctor figure out what the diagnosis is.
Wishing you the best!