Semicircular Canal Dehiscence Syndrome

I was diagnosed with SCDS in September by my Otolaryngologist at the University of Michigan in September of 2015. My symptoms began after an automobile accident suffering a concussion. It began with a hissing in my left ear which was at first diagnosed as tinnitus, which is a symptom of SCDS. After a CT Scan, hearing tests and an ECOG test it was confirmed. I will be having a Middle Fossa Craniotomy on March 2, 2016. Many symptoms are now starting to emerge such as Pulsatile Tinnitus, tremendous body aches, loud noises become unbearable and you can hear sounds such as noises in the lungs when I am lying down. I am at times extremely tired from the noise I am getting in the left ear. Looking forward to surgery.

Hello, I am new to the board here, but not new to SCDS. 

I was diagnosed back in 2006, after five years or more of dizziness, hearing loss, and frustration. I had the surgery on my left ear in 2007 -- my doctor said it was the largest hole he had seen yet, and he was a leading surgeon in the field.  Due to the hole getting so large, I had nerve damage in that ear, and my hearing did not improve post-surgery, but it did help my balance some. 

In 2011 I had the same surgery on my right ear, when the first hole appeared -- and the thin bone structure was predictable for further deterioration. Both of my surgeries were successful in covering the dehiscences well.

My frustration is that I still have so many of the original symptoms.  I can hear my eyes moving, I have a constant "airy" sound in my left ear, and I get dizzy fairly easily. If my ears get plugged up at all with allergies, a cold, I can have a day with activity-limiting dizziness, like today. 

Any area with large florescent lighting throws off my balance, and I wear sunglasses inside Walmart, and even in my gym which has very bright lighting. 

Driving in the car is better for me than riding, although I don't do either without taking a Dramamine non-drowsy first. Flying can be tough, but I take decongestants for several days before and during the flight, to keep ear canals as open and dry as possible. 

I get headaches nearly daily, and sometimes get actual migraines. Driving up into the Colorado mountains to visit my family can be disorienting to me for several days.

I have profound hearing loss on my left ear, and significant loss in my right. I wear a strong hearing aide and have learned to read lips simply by necessity (no classes).  In restaurants or meetings, anyplace with background noise at all, I cannot hear well enough to make out words. I find, though, that if I can see faces, I can make out most of the conversation. 

I am glad I had the surgeries, as I could not have continued on with the disabling vertigo I was feeling prior to the surgeries. I am grateful that my surgeon was skilled and successful with the surgeries.

I am wondering though --- is anyone else having these continued symptoms, even after successful surgeries?  I'd sure love to hear from you!

Thanks!

May I ask who your doctor was?

I just had surgery to repair a hole in my superior canal. I think I picked the wrong doctor. He seems to think I will be able to return to work in 5 days after surgery. I am having a lot of problems with loss of hearing in the effected ear to balance and nausea problems. How long should I wait if I need to have the surgery redone. I am afraid at this point I made a mistake because no PT is ordered and rehab. I was only kept in the hospital overnight then send home.

Hi ,i just finished the surgery 2-3 wks ago . They get u moving asap pain was pretty intense maybe 2days . Stayed in hospital 2 days only restriction was lifting rested alot but kept moving staples out in 6 days surgeons couldn'T believe how it healed so quickly hearing improving in ear still some balance and feeling like i'm floating but it will take some time, started walking with husband took 5 dr. To finally be diagnosed at ahn pittsburgh Pa

I have just been diagnosed with SCDS and am facing surgery, about which I am very nervous, so it is a comfort to know that the surgery has been successful with other people. I have had the condition for 4 years, seen 3 different consultants, and only just received diagnosis, having finally been referred to a London hospital. It has been very uncomfortable and I have no life.

Hi
I feel for you!! What a nightmare. I had surgery 8 weeks ago on November 7 2017. I had the transmastoid approach and my surgeon could not fix the dehiscence in my temporal bone because the sinus vein was in the way and my hole was in the posterior semi circular canal which was tricky for her to plug but she said it was all a complete success from a technical point of view. I spent 5 days in hospital and 3 weeks in a rehabilitation center because my balance was so bad. I still have dizziness and fullness in my ear when I do any activity. I have a rolling walker which I hardly use as I feel it is more debilitating than an aide at this point. I still can’t drive and even though I can walk around the house knowing I can hold onto the furniture etc. going outside is very different! It makes me more dizzy and nauseous! I hope it goes away! I still have autophony etc. so after reading your story, I am praying it will all go away and we both get to know what real life is like without being dizzy and sick!

I've spoken with UCLA who seems to have the #1 docs according to other sites and opinions. Their administration seems flaky (maybe it's because I'm self pay due to insurance and they don't want to provide estimates from beginning to end). Since it's been over a year that Kathy and others have posted, thoughts about the best docs and procedures in the U.S.? I'm dreading the surgery but the autophony is driving me crazy. BTW - no one mentions the doctors who have done their surgery.