**A friend of mine’s mother has had many of the symptoms discussed on this forum for over five years. She has been through all the normal test (that we have all received) therapy, medications , etc. She recently went to a new ENT who noted she was only getting worse and sent her for a very in depth CT Scan which detected this was the issues with her dizziness, balance and other symptoms she has been dealing with for five years.
From what her daughter told me this is not detected via a “normal” CT Scan and requires in depth testing and analyzing in order to find this rare disorder. I just thought I would put it out here for all to see.**
Superior canal dehiscence syndrome (SCDS) is a rare medical condition of the inner ear, first described in 1998 by Dr. Lloyd Minor of Johns Hopkins University Hospital, Baltimore, USA, [1] leading to hearing and balance disorders in those affected. [2] [3][4] The symptoms are caused by a thinning or complete absence of the part of the temporal bone overlying the superior semicircular canal of the vestibular system. This may result from slow erosion of the bone or physical trauma to the skull and there is evidence that the defect or susceptibility is congenital.[5][6]
Symptoms
Superior canal dehiscence (SCD) can affect both hearing and balance, to different extents in different people.
Symptoms of SCDS include:
* Autophony - person's own speech or other self-generated noises (e.g. heartbeat, eye movements, creaking joints, chewing) are heard unusually loudly in the affected ear
* Dizziness/ Vertigo/ Chronic Disequilibrium caused by the dysfunction of the superior semicircular canal
* Tullio phenomenon - sound-induced vertigo, disequilibrium or dizziness, nystagmus and oscillopsia
* Pulse-synchronous oscillopsia
* Hyperacusis - the over-sensitivity to sound
* Low-frequency conductive hearing loss
* A feeling of fullness in the affected ear
* Pulsatile Tinnitus
* Brain fog
* Fatigue
* Headache/Migraine
It is worth a try. I have a very clear semi circular canal dehiscence on the right side but none of the “specialists” will operate to fix it due to my migraine brain. They are afraid that they will make the migraine worse… well it is constant now. The bone is clearly missing on a CT but you must have a very clear pattern on a VEMP test before they will operate. My VEMP symptoms show as being referred to the opposite side as the dehiscence.
Good luck, I went through a year of appointments with this and once again the migraine brain got in the way.
Sally
I was diagnosed by regular CT scan with SCD. My doctor says that though it shows up on the CT scan he doesnt think it is causing my everyday 24/7 dizziness. He thinks it is Migrain related, though I have never had a migraine in my life. Its very confusing!!!
I recommend that ANYONE who thinks they may have SSCD go see Dr. Lloyd Minor at Johns Hopkins. He is not only the foremost expert on SSCD but he discovered it. It was actually thought that I had this before going to see him, and I almost scheduled a surgery to fix this before Dr. Minor ruled it out. So be careful! The treatment is not simple. It is devastating (but life changing if you actually have this condition).
I had 3 high resolution CT scans done and my doctor swore up and down that I had it. Dr. Minor did another one at his office and told me that SSCD is NOT my problem, and that Migraine was. I mean, if you have it you have it. Just be careful because in order to correct the SSCD, you will initially LOSE more balance because of the plugging technique. You dont get that back! You learn to compensate. So why plug up one of your canals if that is not the problem. I have heard horror stories of people going through this surgery, only to find out that SSCD was NOT the problem. So it might be better to either see Dr. Minor, or at least do a few trials of migraine meds first before taking the plunge. SSCD has specific symptoms that Dr. Minor is an expert on pulling out in his exams. I highly recommend him.
Wow!!! Thank you sooooo much for tell me about him. Where is he located?? I was soooo scared when they diagnosed me! I have chronic lightheadedness/dizziness, but it is not triggered by loud noises, so I hope that I don’t actually have it!
Dr. Minor took an administrative job at Hopkins last year. The SCSD program is now being run by Dr. John Carey. Dr. Carey is also knowledgable about MAV and a bit about MdDS. Last time I was in Boston the doctor e-mailed him while I was in the office and he e-mailed directly back. Still didn’t not help, he won’t operate on a migraine brain and uses the same migraine meds as everyone else which as we know are hit or miss.