Tinnitus, Deafness and Ear Problems Support Group
This group is for those coping with Tinnitus (ringing ears or ear noise), hearing loss, and all ear issues. Join to find support and get advice from others.
May I know if there is anyone in the DS Family who has been diagnosed with Dehiscence of the Superior semicircular canal? What advice can you give me? Been suffering from Tinnitus and so many accompanying symptoms for the past two years. Thank you for your help
Are you a member of the SCDS Support website? If not, you will want to go sign up and start reading. There is a ton of information about it there. There are some success stories and other not so successful attempts to treat it. The url is:
http://scdssupport.org/SCDS_Support/Welcome.html
If you haven't done so already, get a second opinion. I have different doctors telling me different things. I know I have it because I hear my eyeballs move. SCDS is the only known condition that makes a person hear their eyeballs move. One doctor is recommending I get surgery again. The other is recommending I completely avoid surgery. At the present time, I am doing nothing about it. I just control my environment to the best of my ability, which isn't always successful, and keep going. I won't consider surgery until it is far worse than it is now.
Be very careful about the doctor they recommend on the Support website. He really messed up a friend of mine. They don't talk about his failures on that website. They talk only about his successes. I know of at least three people who had surgery with him who are in really bad shape now.
That's all the advice I can think of at the moment. I'm so sorry to hear you've been diagnosed with it. It is horrible living this way. If I can answer any questions, please don't hesitate to post here or send me a message.