Hi, I was just diagnosed today. I'd love to hear more about treatment options. My doctor is recomending daily injections of histamines to stop the vertigo and keeping surgery as a last resort. Plus ear plugs whenever I'm anywhere loud. Has anyone explored the injections?
I have so many other questions. For those who haven't had surgery, does it get worse over time?
I can't seem to find the MSN group and signed up for the SCDS group form Mindy's link. I'm very grateful for any tips or tricks.
Best,
Amy
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Suzy, I just had this surgery done on July 11th 2012. I thought I would be a new person after surgery. I was really out of it for a while. I left the hospital on the 14th I think. I was not myself in my head i felt really weird. I also had to have help walking around because I could not walk by myself. I did not know the recovery time would be this long. I have been dizzier and felt worse than before I had surgery. If I would have know this I think I would have thought twice about the surgery. I am still unable to drive and can't work. I am going to a balance therapist twice a week in hoover. Which they are so sweet and seem to be helping a good bit. I definitely understand what you went through Suzy. I hope by now u are doing great.
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Hi marksmichael,
I have the same type of 'dizziness' you describe, not spinning, always imbalance, my equilibrium (gyroscope) is not working. My head feels in a fog all the time. I can hear my eyes move/blink, I hear my heart beat in my right ear, when I talk my voice is all inside my head on my right side, I have experienced deep sharp stabbing pains in my right ear, sleeping is interrupted and difficult, the horizon tilts and jumps when I walk, I feel like I'm floating and have no balance parameters, a light wind can blow me over. I was diagnosed with a right ear SCD, I'm told it's large. I have constant tinnitus and it is very loud and there are multiple tones, it never stops. I have classic symptoms, but my hearing loss does not fit the classic hearing loss patterns. My right ear feels blocked and full. I am still undergoing tests. As for surgery, at first I felt very keen on surgery, but I've done a lot of reading, and so many that have surgery end up with constant headaches, balance worsens, and generally my impression is, you just end up with another set of symptoms. Some people seem to get lucky and get a good outcome, but what I'm realizing is that the numbers are very low.
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Hello! I've been diagnosed with superior canal dehiscence on the right, and possibly on the left. I'm wondering if your surgeon plugged your dehiscence, or resurfaced it. Since you have been happy with results, I would really like to know which procedure you had done. Thank you!
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go to youtube there are a few video's with people that had the surgery done and I think one has a support group posting on it
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just type in superior semicircular canal dehiscence and it should take you there :-)
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poohbear, you may have developed a Perilymphatic Fistula (PLF) as a result of your SC dehiscence surgery. The good news is, this can be repaired with a simpler, safer surgery. I talked with two other patients who had that, and described having the same experience you are having and recovered well after PLF repair surgery. My doc says this happens in some patients. So, ask your doc about this. Good luck!
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Hi Sue , i am still suffering from this horrible condition after 2 ops , if you would like, contact me.
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hi, i have a brother that had tinnitus for 7 years now and just at the end of 2013 they have concluded that it was semicircular dehiscence syndrome. The noises are pretty bad and has 5 different ones that most do not have. He hears them loud. From 1 to 10 on a stereo it would be a 5 or 6. hears it 24/7 this last december. Begining of january he had a cortesone shot directly to the inner ear, couple of days later the sound muffled itself to a 2 or 3 on a stereo.
What are the sounds your husband is experiencing now?
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I had my surgery 2 and half years ago and I'm doing good. I had my surgery at UCLA and my doctors were Dr.Gopen and Dr Yang two great doctors and it was the best thing I ever did. After a few months if having my surgery , my doctor asked me if I wanted to share my story with the media and I told him yes i do because at that time no one had heard of this condition and I plus I wanted to know how many people really had this and to help others get the help they needed, I also hoped to talk with others and hear there stories. I was lucky enough to be on the news , five local channels in my state, over 110 news station all over the united state, the doctor show , readers digest ( April ) issue called amazing-medical-mysteries-solve, There are two support groups with great people in it. Please look me up and I will tell you where it is , so sorry for your husband
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