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after 9 years I have a diagnoses---

Posted , 4 users are following.

michelle10559
michelle10559

I have suffered for 9 years and now I have an answer- I just went and got test results from my ENT and he said I have Superior Canal Dehisense--- the surgery for this is too risky so I'm on a vestibular suppressant (klonopin) and Vestibular therapy--- it is not a death sentence but there's really nothing they can do about it from what he told me---just wanted to share that with you all

1 like, 7 replies

7 Replies

  • gillian76726
    gillian76726 michelle10559

    Posted

    Well thats a shame. How do they come up testwise with that dx, do you know?
    • michelle10559
      michelle10559 gillian76726

      Posted

      On the 3rd they did a VEMP test and another Caloric test--- and my left ear showed a 27% weakness compared to my right ear and anything over 20% is significant- lastly a CT scan and I've had MRIs done but the ENT said with this particular problem CT has a clearer picture,
    • gillian76726
      gillian76726 michelle10559

      Posted

      Google Vestibular  Disorders Association, then your condition diagnosis to get to the page quicker (You can browse their whole website too).Theynhave videos   from people who explain stuff. The one with Sue Hickey os very good,,so do watch that one as it explains surgery she had to have (Eventually!) Veda is a really good source for all,sorts,,they hav lists of 

      Practitioners etc. Descriptions of all the different kinds of our condition, treatments etc.  

  • dizzyear
    dizzyear michelle10559

    Posted

    Hi Michelle,

    Sorry to hear about your diagnosis.  I also have Superior Canal Dehiscence and have had this for a little over 10 years.  It is better to know the cause then not know even if there is no easy fix.  Hopefully, you can find some comfort in the fact that there are options should the symptoms get worse.  My symptoms are also not bad enough to consider the surgery.  So I am left dealing with the side affects.  There are some good support groups out there, but I am open to discussing more if you would like.  Thanks for sharing.  

    • michelle10559
      michelle10559 dizzyear

      Posted

      Sure I'm open to discussing, I know it is not a good diagnoses but do feel better about finally having one instead of feeling crazy in the head---
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