I’m Going Deaf Today (Single Sided Deafness, That Is)

JohnsHopkins

Yes, literally! After 10 months of ear problems , I am heading into my 6th (and hopefully) final ear surgery this morning at Johns Hopkins. [You can read about the previous 5 surgeries to address my semi-circular canal dehiscence and the crazy symptoms  here.] My symptoms these past months include

  • severe dizziness and balance issues,
  • vision problems (things blur when I turn my head and bounce around when I walk/move),
  •  problems with noise sensitivity (loud noise makes me dizzy and makes my eyes blur),
  • continuous, never-ending loud jingle bell noises (and other sounds),
  •  intense sensitivity to my own voice,
  • and over the past six months (after each surgery) my hearing has declined so that now there’s virtually no hearing left in that ear 🙁

You wouldn’t know anything was wrong to look at me, but let me tell you, it has been challenging and debilitating. If I go out (say to Target or something), I feel so sick afterwards that I have to lay down for a couple of hours to get my system back in order.

So last Wednesday, I had all kinds of tests last week at Johns Hopkins… from an MRI to testing hearing and dizziness tests which examined my response to noise and vibrations.

DizzinessTests

 

My new doctor said that my balance system has been destroyed… the membranes within the semi-circular canals have collapsed and some materials from the plugs (from former surgeries) have been pushed into the utricle (hmm.. or maybe the saccule–I can’t remember what he said when he showed me the MRI) area of my inner ear/labyrinth.  There is no saving my hearing… even my eardrum has retracted, etc. etc. The only option is removing much of my middle and inner ear (which will result in complete deafness in my left ear)  or doing nothing (which is not an option if I want normalcy back).

InnerEar-Wikipedia

It was an easy decision to come to… The only times I feel “normal” is when I’m at home and it’s (mostly) quiet, I’m not talking AND I’m not moving around.  Not too much of a life. In fact, hubby and the kids have gotten to go on a number of trips this summer… but all without me. 🙁  Luckily I love reading and have this amazing outlet writing the blog (and other things) to keep me occupied and upbeat.

What does the surgery (today) entail?  They’ll be removing my ear drum, middle ear bones and the semi-circular canals and so forth. Then they’ll take some abdominal fat and fill in the middle/inner ear and plug it up. My doctor said he’ll seal it up and it’ll look like a belly button in my ear canal. Wild, huh?

Since I will then be SSD, single sided deaf, and because I am hard of hearing on the right side already (due to infections when I was a child) I decided to also have a procedure done for a  bone anchored hearing device. They’ll drill a small hole in my skull to attach an abutment (that looks sort of like the inside button on your jeans) . Once that has healed and the bone has grown back (2-3 months from now), I’ll be able to use a processor that will conduct sound through my bone to my (working) right cochlea (I put a big orange X over the side that is going deaf in the picture below):

BoneAnchoredHearingDevice-SSD

 

This is hopefully the last and final chapter of this long, arduous journey.  With six surgeries, believe me, I’m ready to be better!!

Ironically, as I’ve looked into all of this I found that this procedure is under review in Congress right now (July 11 through September 1, 2014). The proposed ruling before Congress  will remove coverage for this type of hearing device under medicare. If that happens, then the private insurance companies will follow suit. The proposal reads:

In section VII,  Scope of Hearing Aid Coverage Exclusion, it states:

 we propose to interpret the term “hearing aid” to include all types of air or bone conduction hearing aid devices, whether external, internal, or implanted, including, but not limited to, middle ear implants, osseointegrated devices, dental anchored bone conduction devices, and other types of external or non-invasive devices that mechanically stimulate the cochlea. We believe, based on our understanding ofhow such devices function, that such devices are hearing aids that are not otherwise covered as prosthetic devices, in that they do not replace all or part of an internal body organ. Therefore, we propose to modify the regulation at § 411.15(d)(1) to specify that the hearing aid exclusion encompasses all types of air conduction and bone conduction hearing aids (external, internal, or implanted).

To place the Baha in the same category as over-the-ear hearing aids and to end coverage would destine people without money and means to live a life of solitude and isolation. If you google “BAHA” images, you’ll see that this type of implanted hearing device has made a world of difference not only to adults  like me, but also to little toddlers and kids.  It baffles me that hearing and deafness are so often shafted by insurance (I’ve worn hearing aids in both ears since I was 12 and they’ve never been covered by insurance).  We’ve always had to pay for my hearing aids out of pocket (which cost $1,800+ each because I need such powerful aids).   I guess hearing is just a luxury, right?! (Sarcasm here.) Seriously, though, hearing loss can have a devastating  impact on people’s quality of life.

If the new proposal were to be accepted (in 2015), the United States would be one of the very few industrialized nations not to cover this life changing technology for patients in need.

I signed the petition at Change.org  arguing for continued coverage for the Cochlear Baha Implant system.  It’s such a life changing hearing solution. Luckily (or whatever the appropriate word is here), I am able to have surgery and will have access to this amazing technology. I sure hope others who come after me can too.

~Liesl

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3 Responses

  1. August 23, 2014

    […] Hubby and I took the kids to the Baltimore aquarium after my post-op at Johns Hopkins (for my 6th surgery in 10 months. Ack!). We got to talking about our (collective, not just the kids!) use of electronics.  We […]

  2. August 24, 2014

    […] Last week, we took the kids to Baltimore for my post-op appointment at Johns Hopkins. We were able to stay right next door at the McElderry House,  small business that provides affordable lodging for families of Hopkins patients in the neighborhoods adjacent to the East Baltimore hospital complex. Everything checked out fine, the stitches that completely block off my ear were removed and the implant in my skull for the hearing device is healing nicely (See this post if you want to know more about my ear dramas and crazy symptoms, “I’m Going Deaf Today… Single Sided Deafness, That Is“. […]

  3. November 24, 2014

    […] the bones, and ear drum removed on my left side leaving me deaf in that ear (see this post). At the same time I had a procedure to place an abutment that in my skull. Now that the bone has […]

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