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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.

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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.
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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.
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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.

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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.

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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.
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Hi Guest :-D

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
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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
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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 :D

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 :roll: and if I put it in here the admin will take it out :cry:

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 :wink:

Hope to hear from you again :D

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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

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Hey folks,
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.
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I was diagnosed with SCDS and had the surgery at JHU by Lloyd Minor. I checked in early Friday and was discharged after lunch on Sunday--no kidding. It took about two weeks for the post-op dizziness to pass completely. Before the surgery, I had all the symptoms--heartbeat kept me up at night, eyes blinking; the sound of my own voice caused vertigo. The fullness in the ear was annoying but not as bad as the dizziness caused by loud sounds--when our building's fire alarm went off, I had to put in ear plugs and be led down the hall. Terrible stuff. Since the surgery, I have had none of the side effects that are possible. No loss of hearing or balance--my hearing tested just as good (I have really good hearing) after the surgery as before. I could not be happier--Dr. Minor changed my life.
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Greetings, I pray my words will find you well. I believe Sigrun is currently undergoing treatment at John Hopkins. To those who underwent surgery, which type did you receive? superior semicircular canal dehiscence
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.

hugs/prayers
xo :-D
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ps; there are many different abbreviations for semi-circular superior canal dehiscence but the consensus now is SCDS superior canal dehiscence syndrome -


xoxo
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In 2003 I created a support group for SCDS on Yahoo groups. Recently, we moved that group from yahoo to it's own website and forum. Since 2003 the group has grown to 85 members and the information shared has become invaluable. Please visit the group at **edited by moderator ** web addresses not allowed**

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.

Hugs,
Mindy Haines
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