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Another Way to Deal with Hearing Loss

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Meandering Through A Hearing World

Another Way to Deal with Hearing Loss

After sitting through a number of meetings and social events last week, I began to wonder if I should reconsider a cochlear implant. My struggles to hear grow greater by the day. My husband does not disagree. He’s witnessed my frustration in noisy environments and on the telephone. He realizes how much energy I use trying to hear. He suggested I do research before making a decision about cochlear implants. Moving to an implant is a life-changing decision as once in place, all residual hearing is compromised or destroyed. There is no going back to hearing aids.

I went online to learn more about what is new and exciting about cochlear implants. While on Google, I came across a website from Columbia University and information about a new clinical trial, which uses gene therapy to regrow hair cells. I read all the information about this fascinating new hearing treatment and watched their online video. The folks at Columbia are one of several research facilities who have received FDA approval to use a drug called CGF166 to regenerate hairs in the inner hear, thus improving hearing.

Columbia’s website http://www.entcolumbia.org/world-s-first-gene-therapy-trial-hearing-loss is full of information about this research study. According to their chief investigator, hair cells in the inner ear change incoming environmental noise and speech into electrical impulses. These impulses are carried through the inner ear system into the brain. Without hair cells sound goes nowhere, resulting in a sensorineural hearing loss. It is believed that the degree of one’s hearing loss is related to the number of viable hair cells.

CGF166 has been successful in regenerating hair cells in mice and other mammals. In the last steps of the FDA approval process, clinical trials have begun on people with severe and profound hearing loss. To become a candidate you must meet the criteria listed on their website. Unfortunately, people with cochlear implants are not candidates for this study. There is a similar study at Johns Hopkins University https://sites.google.com/site/vestibularneuroengineering/Home/cgf166trial

I applied to both institutions, but have not yet heard back. If accepted, I will have to undergo testing and then surgery to have the drug inserted in to my inner ear. There will be follow-up appointments for six months to see if my hearing improves. It sounds daunting, but I believe that those of us who suffer from hearing loss must take personal responsibility. For some this might be another way to help you hear. It is risky and new and that brings on fears. But if participating in this study can help restore part of my hearing, I believe I will be better able to meander through the hearing world.

Here is a list of institutions involved in the study

  1. Kansas: Kansas City, Kansas, United States, 66160

Contact: Bryan Humphrey 913-588-3759 [email protected]

Contact: Kevin Sykes 913 588 7154 [email protected]

Principal Investigator: Hinrich Staecker, MD

 

  1. Maryland: Baltimore, Maryland, United States, 21287Principal Investigator: Charles C Della Santina, MD
  2.  
  3. Contact: Kelly E Lane 410-502-8047 [email protected]
  4. New York New York, New York, United States, 10032Principal Investigator: Lawrence Lustig, MD
  5.  
  6. Contact: Dylan Cawley 212-305-2873 [email protected]
  7. Oregon: Oregon Health & Sciences UniversityPrincipal Investigator: Timothy Hullar, MD
  8. Contact: Eleni O’Neill 503-494-3569 [email protected]

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Linda Bilodeau

I’ve grappled with hearing loss since 1978. Through it all, I’ve faced periods of denial, acceptance, curiosity, trust and hope. But more often than not, I’ve felt annoyed, angry and frightened. I’ve encountered despair, loneliness and envy. I’ve experienced panic attacks. I’ve met understanding people, kind souls who helped me a great deal and others who thought I had nothing short of an invisible plague. As a way of coming to terms with my hearing loss, I’ve decided to put my feelings about my disability down on paper. My hope is to better understand myself and perhaps you’ll find a little something in my meanderings that will help you, too.
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