superior canal dehiscence syndrome (SCDD)

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.

Please reply if you are still looking for info about this. I had the surgery in Sept 2005, and it made a huge difference! This condition can cause a deterioration of one's quality of life over time. There is an SCDSsupport group on Yahoo with many present and former sufferers. I hope your husband can get the right doctor to help with this! It's very hard to find one.

Hi - I am currently being tested for SCDS and do know how hard it is to live with this condition. I am desperately trying to talk with some people that have had the surgery to see their results. Please respond if you know the support group for SCDS. Also, I would love to talk to you about your results. Thanks!

opportunafish wrote:

Please reply if you are still looking for info about this. I had the surgery in Sept 2005, and it made a huge difference! This condition can cause a deterioration of one's quality of life over time. There is an SCDSsupport group on Yahoo with many present and former sufferers. I hope your husband can get the right doctor to help with this! It's very hard to find one.

Hi you all.

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 **

opportunafish wrote:

Please reply if you are still looking for info about this. I had the surgery in Sept 2005, and it made a huge difference! This condition can cause a deterioration of one's quality of life over time. There is an SCDSsupport group on Yahoo with many present and former sufferers. I hope your husband can get the right doctor to help with this! It's very hard to find one.

It appears I may have SCDS. I had a high res CT scan yesterday and I am awaiting the results.

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.

Hi Guest

Have you had your results yet?

Sorry how late I saw your post... I have not been on the net lately

Unfortunately I can not give any e:mails in here because it is not allowed in here 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

Hi everyone.
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.
Thanks

I cannot find the group on msn. I would really like to discuss this with someone that has had experience with this syndrome. I just had a "major" change in hearing last night and am very concerned. I went to msn and typed superior canal dehiscence syndrome among other attempts and cannot find the "group". Can you assist me further. Thanks

Miss SCDS wrote:

Hi Guest Have you had your results yet? Sorry how late I saw your post... I have not been on the net lately Unfortunately I can not give any e:mails in here because it is not allowed in here 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

How is it possible for us to communicate outside of this forum? Is it possible? I would like to speak with you about some of the details of your experience with the physician etc. I am trying to get a referral to Dr. Minor at Johns Hopkins.

Any information would be greatly appreciated, as I am very concerned about my quality of life. How is your husband?

ericoleen wrote:

Hi everyone. 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. Thanks