I suffer from Intracranial Hypertension, as well as Ehlers-Danlos Syndrome and many of its related conditions. I also have Degenerative Joint and Disk Disease, and Osteoporosis. I'm 28. On December 1st, 2019 I had lost my hearing in my left ear and a week later while I was working at our Christmas tree sale at our firehouse, I lost the hearing in my right ear. They couldn't figure out what was wrong until New Years Eve, when I went on my last call and later had a "seizure" episode. The doctors at the emergency room thought I was having an Aneurysm in my brain, so they immediately did an MRI. I had Mastoiditis. I was on antibiotics for months, which the Mastoiditis was unreceptive to. After finally having a CT Scan of my temporal bones at the end of March in 2020, I found out that I had SemiCircular Canal Dehiscence bilaterally. I was told by a Neurotologist and a Neurosurgeon that my spinal fluid pressure may have been so high all of these years that it caused the holes to open or widen. I was deaf for 21 days, only hearing my own voice and bodily movements which have never gone away. And my hearing has never came back fully. 2 years later, I still have yet to see my surgeons in person due to COVID running rampant. And because I suffer from these other conditions, especially IIH, I need to get a shunt put in before they do my SCDS surgeries. At this point, it has changed everything in my life and has left me nearly completely disabled. I've had so many scares throughout the last 2 years, but such a huge thing that alot of people don't realize is the "mental health" changes SCDS can cause due to desensitization of the brain. I can barely leave my house, and because of pressure changes in my brain in addition to the balance issues, It's a good day if I can stand on my own two feet for 5 minutes. I wish there were more doctors around who are knowledgeable about SCDS, and more importantly that it was actually taken seriously. My prayers are with every single person suffering, as well as the surgeons that have dedicated their lives to helping us🙏

Thank you, Dr. Carey! You saved my life!

Dr. Carey installed my bone anchored hearing aid stud.

Mine gives me a feeling of dis-ease, including pulse in ear, hypersensitivity to my voice, and a feeling of being off balance. Fatigue also. The doc says it’s not serious enough to operate on but I’m going to go back and demand an operation. 8” howitzers did a lot of it in Vietnam.

Excellent Dr. Carey

Dr. Carey gave my life back to me and he is my hero. God lead me to him and courageous champions like Pam Gilbert, Linda Steber, Karrie Aitken, and Elizabeth Nielsen here on KZfaq. Thank you all.

So helpful! I thought my hearing issues were all connected to having septoplasty/sinus surgery. Now it makes sense WHY that happened. Thank you for the explanations, symptoms, treatments.

I have SSCD on the right year. In my case there is no bone separating the ear from the brain. Fortunately I've only had vertigo twice within 7 yrs. I do hear my "heart" in that ear, specially when I stand up after sitting down for a long time; I have hearing loss, I hear my steps, specially outside and I often hear my own eyes. My voice sounds as if it is coming from inside, like an echo. Loud sounds like dishes and loud TV are very uncomfortable to me. I also can't understand people speaking gin a loud environment, like a restaurant.

I have scds and it made it impossible for me to continue to bartend. Between load music and increased heart rate my symptoms were so severe I felt like my legs were non existent, I couldn't think (brain fog), and felt like someone had knocked me out constantly.

I have all the symptoms of this..I had the CT scan..the bone is thin..can you still do something if the bone is only thin.. because I can't live like this

He uses the word "either" when describing hearing loss and vertigo. I have both - is that unusual?

Found a great doctor in buffalo where I live he's done the surgery for 20 years

SCDC on both sides, I still have VOR symtoms last surgery was done 2 years ago I did the Cawthorne exercises for a couple of weeks after surgery and went back to work now I ask myself if I do the Cawthorne exercises again will it help improve or is it to late ??

Before surgery occurs, may I fly in a pressurized commercial aircraft? I have no symptoms yet other than the drainage coming through my ear tube.

Hola vivo en Houston Texas y recién Fuy diagnosticado con este problema después de contraer el covid 19 y tengo casi todos los síntomas esto a cambiado mi vida por completo solo quería saber si alguien sabe cuál es el costo de la sirugia o de algún lugar donde puedan ayudarme aquí en usa gracias y espero alguien pueda ayudarme saludos

Hola soy Pedro de Argentina. me operaron pero no dejo de tener la autofonía!!! por favor me gustaria que me den un mail para contacto. graciaS

Are there any 'non-surgical' treatments for this syndrome?

Has Anyone ever heard of Dr. Barry Strasnick in Norfolk Va? I heard DR Carey is one of the best. I just wanna see if my doctor is good too.

This is the location for the Superior Canal Dehiscence Support Group (SCDS) on Facebook. facebook.com/groups/221257197900489/

Can it cause tinnitus?

This is the location for the Superior Canal Dehiscence Support Group (SCDS) on Facebook. facebook.com/groups/221257197900489/