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Superior Semicircular Canal Dehiscence

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 KMac
(@kmac)
New Member
Joined: 9 months ago
Posts: 2
Topic starter  

Hello,

I was diagnosed with SSCD 2019. I woke up one morning and disequilibrium became my new best friend. I've always had tinnitus. It is worse now. Borders on painful. Aural Fullness. I had a hole in the skull where my brain was exposed. The doctor said that was why I had the aural fullness. The pressure was leaking into the inner ear. I also had Autophony. I've always had that. I didn't know that not everyone could hear their bones moving or hear their heartbeat. It also gave me noise induced vertigo and pressure induced vertigo. The Neuro ENT found a hole in my Left Superior Canal and the Right side is flat at the top. (They do not know if it is open.) I had Left Trans Mastoid Resurfacing Semicircular Canal Dehiscence Cranioplasty in November 2022. Vestibular PT. It helped the noise induced vertigo and pressure induced vertigo. The aural fullness is worse. Soooo much worse. The autophony is worse. The tinnitus is worse. The vertigo is 99% gone. The disequilibrium is worse. So, this is where I am at. I am okish around the house. Once I leave and am at a store the disequilibrium gets really bad. The crazy part is that when we go to leave, and I am in the car riding it goes way down. By the time we get home I'm doing better. So weird. 

I can't find a lot on SSCD. Any suggestions would be greatly appreciated. I hope you all have a great day.

KMac


   
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(@chandra)
VeDA Staff
Joined: 2 years ago
Posts: 12
 

Hi KMac,

A couple of websites that you may be interested in regarding SCDS are:

The SCDS Society
SCDS Info

I would also suggest the Facebook Support Group that is listed on our website: 

SCDS Support (Superior Canal Dehiscence Syndrome)

This post was modified 9 months ago by Chandra

   
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(@alexandra)
New Member
Joined: 3 years ago
Posts: 4
 

Posted by: @kmac

Hello,

I was diagnosed with SSCD 2019. I woke up one morning and disequilibrium became my new best friend. I've always had tinnitus. It is worse now. Borders on painful. Aural Fullness. I had a hole in the skull where my brain was exposed. The doctor said that was why I had the aural fullness. The pressure was leaking into the inner ear. I also had Autophony. I've always had that. I didn't know that not everyone could hear their bones moving or hear their heartbeat. It also gave me noise induced vertigo and pressure induced vertigo. The Neuro ENT found a hole in my Left Superior Canal and the Right side is flat at the top. (They do not know if it is open.) I had Left Trans Mastoid Resurfacing Semicircular Canal Dehiscence Cranioplasty in November 2022. Vestibular PT. It helped the noise induced vertigo and pressure induced vertigo. The aural fullness is worse. Soooo much worse. The autophony is worse. The tinnitus is worse. The vertigo is 99% gone. The disequilibrium is worse. So, this is where I am at. I am okish around the house. Once I leave and am at a store the disequilibrium gets really bad. The crazy part is that when we go to leave, and I am in the car riding it goes way down. By the time we get home I'm doing better. So weird. 

I can't find a lot on SSCD. Any suggestions would be greatly appreciated. I hope you all have a great day.

KMac

 


   
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(@alexandra)
New Member
Joined: 3 years ago
Posts: 4
 

I also have SCDS I live in melbourne.  Very rare not much support out there.  


   
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 KMac
(@kmac)
New Member
Joined: 9 months ago
Posts: 2
Topic starter  

@chandra thank you for this information. I really appreciate it.


   
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(@libbyboyd)
Active Member
Joined: 8 months ago
Posts: 40
 

After surgery and vestibular therapy, the body may react in a variety of ways. It is possible that the current worsening of symptoms is due to an adaptation process. It is important to discuss this with your doctor and consider possible additional treatments or adjustments to your rehabilitation program. Pay close attention to symptoms and their changes for a more accurate diagnosis and effective treatment plan.


   
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