I, too, am a little nervous about getting the surgery. First of all I'm in Arkansas and really don't want to travel to either coasts to have the surgery -- but I'm also 65 and don't want to lose any momentum I have going but getting it done. I'm healthy and now retired. If I do get the surgery, I need to get both ears done and am not sure they'll do both ears at the same time. I don't want to waste even a month if it isn't going to work...
Hi My name is Michelle Komjathy, 42 yrs of age, born in Ireland and living in KY. I have had similiar symptoms for most of my life a long with many ear/ head surgeries due to Cholestiatoma. I was recently diagnosed with SuperiorSemicircularCanal Dehiscence via CT and scheduled for the VEMP on 06Dec2012...I am concerned about possible surgey, surgery procedure, scars, recovery time. I work for University of Cincinnati Hospital as a Study Coordinator/Project Manager for the Neurology Department - Parkinson's & Movement Disorders and the doctor that will be doing my surgery-necessary is very well regarded. Well, let's say he has cornored the markert on this syndrome. All of the research/reading I have been doing to educate myself on my health is scarying me a little. It does seem to be a procedure that is safe. However, it is not a piece of cake, it seems a little radical and very evasive:-):$
Hi Michelle so sorry you have this and I had the surgery for it.My surgery was june 17 2011 at UCLA and it was the best thing i did.I am not 100% but I am whole lot better then before.I can roller skate go to movies ,swim with my kids and even went on a few rides at knott's berry farm . I'm in this wonderful support group just for this disorder and the people there are AWESOME!!! come join and hear there stories and they will answer any questions you have :-)
Thank you for your prompt response and will do.
To worried Mum did your daughter ever get the help she needed? If she hasn't or if she has please come join this group they might be able to fine answers you need to help your daughter and maybe help you daughter know she isn't alone in this disorder....http://www.facebook.com/groups/SCDS.support/ ....It's a GREAT place with AWESOME people :-)
Not sure about going on FB..because of co-workers, not sure if my fellow employees would be able to see my affiliation...But, how was your recovery time? It sounds to me -that it was well worth it..... What about the scar and hair?
you are very Welcome :-)
Hi,
I live in northern California and am thinking of going to U.C.L.A. for a positive diagnosis and if needed surgery to cope better with this condition. I have been struggling with this for 5 years now as the symptoms continue to deteriorate and I hardly ever socialize because it is so difficult with the noise, not knowing if I'm talking too loudly, etc.
Did you see Dr. Gopen at U.C.L.A.? How long was your hospital stay and recovery? Any information you can give me is appreciated. It's just so nice to know I'm not crazy because I can hear my right eye move.
April
Hi April,yes i saw Dr.Gopen and he is just wonderful.I am very happy he did my surgery.I was in the hospital 4days ,could of went home day 2 but thought I give myself more rest before going home to the kids and my puppies lol Recovery took a good 8 weeks where i could start really doing things ,but everyone recovers different. I have some video's on youtube just type in superior semicircular canal dehiscence there's one my husband did,it's when i was in the recovering room and I did a video for UCLA Health system.
Hello Michelle. Did you ever get the surgery done? Who did it, and how did it go?
Thanks, carousel