Ear Surgery #5 – Trying to End my Noise Sensitivity, Autophony, Balance Issues and More

While we have had a really wonderful few weeks homeschooling, the past several weeks have been extremely challenging for me in other ways.  I never imagined all the medical difficulties I would face.

Tomorrow morning (today as you read this), I am going in for my 5th ear surgery since October. Along with other things, I seem to have semi-circular canal dehiscence in the horizontal canal.  My last surgery in March was supposed to be *it,* the final leg in this journey. My doctor “plugged” the horizontal canal and tried to patch up the “dehiscence” or hole around the canal.  The most recent MRI even shows that it’s plugged. Unfortunately, I’m still plagued with problems:

• I am always out of balance and slightly dizzy.
• My ear constantly rings and zings. At times (like Saturday night and Sunday night), I have episodes of roaring in my ear that are so loud and scary that I contemplate rushing to the emergency room. The noise in my head is so loud–it’s like having white noise turned up to the maximum volume on the TV.  At its height, I feel like something in my head will explode. Ack! Scary! But then, because my ear issues are so rare and so complicated I know that no normal ER doctor would be able to help me… and I know that if I wait it out, it should die down (not go away, but will settle down to a “reasonable” level).  Still, I sure do get scared when this happens.
• Last week I had a bout of vertigo that left me in bed throwing up.
• I have a constant ear ache.
• My ear (nerve) feels like it’s on hyper-alert.
• I am extremely sensitive to noise, so I can’t go into loud environments like a gym, restaurant, etc. without paying dearly (with more ringing and feeling nauseous).
• I am extremely sensitive to the sound of my own voice. This is called autophony. I do talk and read to the kids, but again I pay for it later.

On this journey, I’ve realized how important it is to be your own medical advocate.  I have read and learned more about the inner ear, vestibular system and the research and surgical techniques than I ever imagined.  I have kept detailed records of how I feel, what symptoms I’m suffering from and read up on all those on the Internet and in whatever medical journals/abstracts I can find online.  In the end, I wound up finding research on another option for treating my condition that my doctor said was a good option and that he would try.

All along, my ENT has been amazing.  He has spent a minimum of 30 minutes with me (usually 45+) with me almost weekly or bi-weekly since October.  But as we check off and go through surgery after surgery, I think he’s coming to the limits of his experience and expertise.  I am absolutely hoping that this surgery will work… but if not, he’s not sure what more can be done. In fact, he has no explanation for some of the symptoms I described above.

So since he doesn’t know what more to do, I know it’s time to travel farther afield… It’s time to take my 2-inch thick medical notebook, all the tests, CAT scans, and MRIs to a research hospital.  Maybe, if this surgery doesn’t work, they’ll have some solutions?

I seem to be a one in a million… one in ten million type of case… but I know we’ll get through it one way or the other.

I had DD take this picture of me with the beautiful flower ball that was given to me this weekend.  Isn’t it spectacular!  Flowers that are cheerful and won’t die. It sure makes me smile! 🙂

When I get home, I’ll look something like this… probably not with a big ole smile on my face, though.

So, that’s about it for now!

My other ear posts:

I doubt too many people will want to delve into much detail, but there was someone who had complications to his ear surgery and happened upon one of my posts. Since others might be looking for stories about superior semi-circular canal dehiscence, BPPV, vertigo or some of the things I’ve gone through the past 8 months I thought I’d paste in links to my other posts.   I didn’t realize how many posts I’ve written about all this… it sure has been a loooooong journey.

In Crisis, Lies Opportunity for Growth (March 27)
My 4th Ear Surgery (March 18)
My Debilitating Medical Problems and Crazy Symptoms (March 2) – Just prior to my 3rd surgery to remove the prosthesis.
My Ear is Broken – (Feb. 1) Post 2nd surgery, which was only partly successful… and as my symptoms worsened. This explains (with pictures) what’s wrong medically.

Good News, Bad News About My Ear Surgery (Jan. 22)
Mom Down! Why I’m in Surgery Today (Jan. 20 my 2nd surgery) — Surgery to remove the bone filler because I seem to be allergic to the calcium phosphate.
Self-Reflection Questions for New Years (Jan. 2014) I talked about the struggles of dealing with all of my ear issues.
Living with Dizziness, Vertigo and Balance Issues (Nov. 9) — After my October surgery when I came down with BPPV, a horrible, horrible case of vertigo… when the little crystals in your ear fall out of place and make the walls spin and makes you incredibly nauseous.
A Rough Week – When None of the Trivial Things Matter and Only the Trivial Things Matter Post-surgery post from my first (of 5) surgery about how great the kids were, the support I got and all that!
My New Vocabulary Word – Cholesteatoma – This was a successful surgery on my right ear… not related to all the drama with my left ear and the 5 surgeries that followed. Jan. 2012, when I found out I need surgery on my right ear. The other posts (mentioned above) were all the recent surgery on my left ear.