Relief and Distress... NO WONDER!

Last week I was activated.  I didn't update my blog because the activation was very disappointing and hard to take.   I went home feeling full of regrets.  When I was turned on, I felt vestibular fullness, hard feeling to describe, dizzy and pressure, and no sound.  My audiologist watched my face and when she turned it off, she could see immense relief.  I was just trying to be tough.  My audiologist worked with me for a bit and turned everything way down so that I would be more comfortable with it.  She gave me 5 programs to work through and a month to get there.  I did it in two days.  I am someone that will be dedicated and push myself.  I told myself I just need to train my brain.  I was hearing sounds at this point but they were all the same sound and the same note.   It was very distorting and actually harder to hear with it on.  I still kept it on 12 hours a day.  My audiologist wanted me to work up to 4 hours the first day, I did the full day.  Push push push.   I went on walks, did my therapy exercises, tried to be active as I could be without making myself sick.

Last week, I met with my surgeon for a follow up.  He felt that my symptoms due to my EVA (enlarged vestibular aqueduct).  He still felt optimistic that I would heal with time.  I was making some progress, just slow.   I requested from him a CT scan for my peace of mind.  I did not want to immerse myself in  therapy until I knew everything was where it should be.   Yesterday I found out that the implant itself is coiled in the vestibule rather that the cochlea!  Coiled in the wrong place, in my balance system.  No wonder!  I don't blame my surgeon, he is good at what he does.  He is very skilled and came highly recommended.  I was his FIRST case and he has done thousands upon thousands of these.  We are not sure how it happened.   I do wonder if the standard of practice needs to be changed in case someone may have some ear abnormalities and or just for safety purposes?  I don't know enough at this time to make a judgement.  I would think that there needs to be a way where they can see where they are placing the electrode rather than by doing it all by tactile. Currently there are studies in place where they are doing intraoperative guidance placement using a CT.  This is something I am looking into.  We will have to explant the current device I have and reimplant with a new one, in the right place.  This means another repeat in surgery.   I would appreciate prayers for guidance as to where to go from here.


Heidi Cornwell said…
Thank you for sharing your journey. I have learned so much just by reading your posts since March. Our family will continue to pray for you.