Hi, my husband was diagnosed with superior canal dehiscence syndrome (SCDS). For the last five days, he’s been loosing his balance all the time, and can’t walk at all. It looks like he doesn’t know what is up and what is down. I’m so worried about him! Please give me some information about this disease, and tips how to help my husband.
Hello, my mother had superior canal dehiscence syndrome. This is a balance disorder resulting from a hole in the bone overlying the superior semicircular canal within the inner ear. The symptoms are dizziness, vertigo and nausea. She also had vestibular hyperacusis. This is a symptom when the vertigo and imbalance are triggered by sound. The doctors barely managed to diagnose her. They did many tests before they finally sent her to vestibular evoked myogenic potentials, and found a cause for those symptoms. Sperior canal dehiscence syndrome often requires surgical treatment. My mother was operated, and they patched her bone from inside the scull. She also went to physical theraphy, and she is feeling much better now.
My name is Sigrun and I am from Iceland. I was diagnosed with SCDS almost a year ago.
I have not find any support group on Yahoo or anywhere else on the net so I made a new one at msn.com.
In few weeks I am going to meet with Dr.Lloyd Minor at Johns Hopkins Medicine in Baltimore to have some testing and hopefully he will operate on me later this year :)
Please feel free to join and have a chat.
**edited by moderator ** e-mails not allowed **
I cannot find the group on msn.com
Would it be possible for you to email me. I have quite a few questions.
Hope you are doing okay.
Have you had your results yet?
Sorry how late I saw your post... I have not been on the net lately :-P
Unfortunately I can not give any e:mails in here because it is not allowed in here 8-| and if I put it in here the admin will take it out :'(
But I will tell you (and hope the admin will not erase it) that if you go to the msn sight then just put SCD or Superior Canal Dehiscence Syndrome in the search.... and Bingo you are in ;-)
Hope to hear from you again :-D
I came upon this forum, and thought I might be able to help some of you, as well as there may be some of you who can help me.
My husband was diagnosed with superior canal dehiscence syndrome, and I understand well, the ordeal folks go through, just finding out what their problem is, then actually treating it.
He had the surgery about a year and a half ago. It was performed by an excellent dr. In fact probably the best dr. I've ever met. He is actually nationally recognized, I think maybe even worldwide known, as one of the best, in this field. Anyway, I'm sad to say that while my husband does have a significant decrease in his symptoms, his problems are by no means solved. I'd love to talk to others , and find out what your experiences with the treatment(s) have been, particularly anyone who had the surgery, and if it worked or not. Anyone with any questions for me, I'm happy to answer.
Any information would be greatly appreciated, as I am very concerned about my quality of life. How is your husband?
Just received a diagnosis of scds a few days ago. This condition
was extremely difficult to find. Required multilple CT scans and
a lot of time. Anyway, they tell me it can be surgically repaired
and the success rate of the surgery is very good. I'm headed
to Salt Lake City in two weeks to have the resurfacing technique
performed. I'll post again after the surgery and let you know
how it all came out. In the mean time, if there is anyone out there
thats had any experience with the University of Utah's resurfacing
procuedure I'd sure appreciate hearing about it. Thanks.
MIDDLE FOSSA CRANIOTOMY or TRANSMASTOID REPAIR? Did you have bi-lateral dehiscence. Research had indicated that normally the left ear is worse than the right but my right ear has the worse dehiscence. My left ear is thinning and possible dehiscence but also exhibits Meniere's symptoms. What is your biggest complaint prior to the surgery. My vertigo is noise and pressure induced, nystagmus and current drop attacks are common. I will be undergoing the transmastoid repair for my right ear. I have other questions if anyone would be willing to answer; I'm trying to do some research on my own. I was diagnosed june 4 2004 and have had vertigo literally every day since.
The moderator's wont allow a web address or email address on this forum...which really limits the help that can be provided here. I don't quite understand, but I'm sure they have their reasons. Searching my name and SCDS should yield the site I'm referring too.