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What can be done when surgery for Superior Semicircular Canal Dehiscence fails?


Jesse
(@jdwolff)
New Member
Joined: 11 months ago
Posts: 1
Topic starter  

About 7 years ago, my mother underwent surgery to repair one ear (she had SSCD bilaterally). Unfortunately, the surgery failed to plug the hole well enough and she returned to having the same symptoms, HOWEVER, her vestibular nerve on that side was severely damaged, and she has since suffered disabling effects on her vestibular system. She has been told not to have the other side's SSCD surgically corrected in case they damage the remaining vestibular nerve. Anyone have any suggestions of where to start researching interventions? Could Deep Brain Stimulation help with this type of vestibular issues, allowing her to walk without being off-balance? Thank you for your time. 

-Jesse


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Ms. Cynthia Ryan MBA
(@cynthia-ryan)
VeDA Staff
Joined: 6 months ago
Posts: 46
 

Hi Jesse,

I'm sorry for what your mother is going through. Have you read VeDA's article on SSCD? I would also recommend that you post your question on some of the Facebook groups where SSCD patients congregate, like this one and this one.

Who is your mother's surgeon? Some of the more well-respected SSCD surgeons are Dr. P. Ashley Wackym in New Jersey and Dr. Gerard Gianoli in Louisiana.

I am not a medical professional, but I have heard that vestibular healthcare providers are cautious about causing additional damage to one ear when the other has already been damaged. 

I hope that's helpful.

Cynthia

 


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Dr. Joyce Chadderdon PT, DPT, NCS
(@joycopacbell-net)
New Member Professional Member
Joined: 6 months ago
Posts: 1
 

Hi Jesse,

I treated several patients after SCCD surgeries when I worked at the Stanford Ear Institute. I recommend that vestibular rehabilitation with an experienced vestibular physical therapist should be the first step to help adapt the central nervous system for the differences in the peripheral vestibular system. Additionally balance training and the use of walking sticks would help improve balance and your mother's safety and sense of equilibrium. Many good PTs can be found either on the VEDA site or APTA find a PT.

I hope this helps!

Joyce Chadderdon PT, DPT, NCS


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Mika
 Mika
(@mika)
New Member
Joined: 11 months ago
Posts: 1
 

Hi Jesse,

I recently discovered Dr. Isaac Yang from UCLA, post several surgeries with complications. Twelve years post a scuba accident, tremendous research and after talking to several patients, I was diagnosed with bilateral Superior Canal Dehiscence, Perilymph Fistulas, and secondary Dysautonomia symptoms.

https://www.youtube.com/watch?v=I4dcLdq_WIc&t=56s

Hope this information helps and that your mother recovers. 

Best wishes,

Mika


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