you can see video's of people with superior semicircular canal dehiscence on youtube
I have SCDS. I have not had the op yet. As I live in Sweden (am English) I am in a group on Facebook called Takfönster SCDS. Not much good for you unfortunately. Oh! See you are from Iceland. There are quite a few that have had the operation on the swedish facebook page. There are some quite recent pic of the scars. Get in touch if you like! Regards Sue
the support group for this condition is
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It is full of very useful and up-to-date information
I know this post is over a year old, but if anyone is still interested, there is a group on Facebook for this condition. Do a search for "Superior Canal Dehiscence Syndrome". There are more than 200 people in the world with this condition, by the way. There are over 300 people in this group alone. I suspect there are thousands of people with SCDS in the world, possibly more. It's not too well known about in the medical field. I was recently diagnosed and have surgery scheduled in September with Dr. Clough Shelton at the University of Utah. He is one of the best neurotologists in the country. When I told my family doctor that I was diagnosed with superior canal dehiscence syndrome, he looked at me and said, "you have what?". Not many people know about it, including doctors.
Anyway, there are a few groups on Facebook and there is one web based group that I know about. Do a Yahoo search for SCDS Support and you should find it. Hope this helps. I can tell you there are many people out there suffering with the same symptoms as you!
hello im new here I was told last friday i have SCD...... about 15 years ago I became very spacey i couldnt describe it anay other way felt like i was in a dream state all the time. the doctors kept telling me it was anxiety. I met with another E.N.T. that did a ct scan and told me they were 90% sure they cansee a hole. I dont know if thats enough to justify a surgery I have read thay go in your ear canal and through your skull lift the brain ? it souds scary to me not sure about this. i feel bad everyday though. I have been refered to a place in Boston called eyes and ears infermory. to meet with a surgon in september. Im really nervous but over the ast few months i feel drunk all the time very tires getting migraine headaches almost every day, Feel disotiented , confudsed even forgetful. has anybody else ever had these symptoms? thanks
I'm dealing with this condition as well. It's absolutely horrible and completely stops your life on so many levels. Doctors' seem clueless...it is very depressing. I am going to see a doctor at Penn University hospital for the second time in Sept. I have a feeling I'm going to have to have the surgery to correct it. It is very scary to me to have them working inside my head but I can't live like this for the rest of my life. I feel your pain and frustration (and fear) about this. You are not alone and I wish you good luck and peace. Janelle
scdssupport.org is the support forum for this condition - it has lots of information there and plenty of supportive people for you to talk to.
Hi, I have recently been diagnosed with this. I have total disherence of left ear and partial of right - being no bony roof on left, and partial on right. I have had this most of my life yet it was never picked up. I have multiple sclerosis and was diagnosed in the late 70's with menierre's because no-one could explain why I had migraines and terrible tinnitus. Have lived with balance issues, terrible vertigo when I walk. Sight blacks out with certain frequencies of sound. Issues with certain lighting. Have nystagmus. Can hear my heart, knees etc. Cannot function when out socially as I cannot hear people talk once there is background noise. Have complained about this for around 20 years and no-one would listen, Especially because I have MS. Really frustrated me.Lately the ringing has gotten worse and have squealing as well. Have the worst fatigue for years now and was told it was chronic fatigue syndrome plus fatigue for MS. Now it looks like I have another reason for it. I've also been complaining for years about epsiodes of my knees snapping and grinding. Can also hear my heart murmur when it plays up. Can hear my heart beat, especially when trying to sleep - all drives me nuts!! The constant headaches are a nightmare!! I have not had a day in over 20 years without a headache!!! I am seeing a surgeon next month about options for an operation but I am not keen to undergo surgery. Is there anyone else out there with MS, or other health conditions that have had this surgery?? Was recovery easy?? I really want to get my life back and if this operation can improve my hearing, balance, tinnitus, fatigue etc., I will be one extremely happy person.
I am considering the non-invasive method to try first. Has anyone had this procedure? If so. did it work for you?
Hello all fellow sufferers of this terrible condition.It has taken me 12 years to find out what is causing these symptoms.I have right sided dehiscence but am told the left side has thick bone overlaying the canal.Was offered the operation straight away but as I am now 68 years old am somewhat reticent about going ahead.The surgeon has performed 6 ops. ~ 5 successfully.I had sinus surgery along the way but still have what seems like perenial rhinitis all the time.Does anyone else have this also?By the way,I am new the use of the internet!
scdssupport.org is the best website to go to for all information and support. Good luck.
I have all the symptoms in the posts. I am deaf with "evas", and was able to hear with an aid 2 mos ago. I went to an ENT in Tucson, AZ who said much of my symptoms, nystagamus, hearing my heartbeat etc. were due to my deafness and the only thing was a cochlear implant. I had no tests done prior to check for anything else by him. Now I am in worse condition - can't function, can't talk (too loud), totally deaf and losing the will to live because I have no help and feel like I'm going crazy. I read this about Dr. Baria in Phx. which is closest but cannot find him online. Is the spelling correct? Is he an ENT or ? I need a qualified specialist who understands these symptoms and able to thoroughly read a CT/MRI. I would greatly appreciate the help from someone in my area who could give me a name of a -QUALIFIED- person in this area of SDC.