Its been six months since my surgery. A surgery that implanted a gene-carrying virus in my cochlea hoping to restore/repair the profound hearing loss in my right ear.
It only worked a little. Additionally, if there was going to be a significant change, either better or worse, it should have shown up by now.
But here’s the caveat. I’ll repeat that it is astounding that it worked at all; and there were some participants who had significant improvement. And best that I can discern, no one had any negative effects..other than the disappointment of no improvement or transient improvement.
This first human trial has been done. This step has been taken. The research teams at KUMC, Johns Hopkins and Columbia University will push on with their work. Those of us who were participants will push on with our lives.
The researchers will review what they have learned from the 26 of us. They will design and map the next gene therapy study.
We will continue to look for the best ways to mitigate our hearing loss. It’s a disability that threatens to cut us off from the people, work and activities that give our lives full measure.
As for me, now comes a fork in the road. The path I will likely take will lead me to a cochlear implant. That is another journey that I will gladly share if it comes to that. It promises to be quite the travelogue and this time fortunately, a whole lot of people have gone before me and I can learn from that.
I have started the research and due diligence; I have spoken with the surgeon who did the gene therapy surgery about doing my implant surgery as well.
I have two relentless aspirations surrounding my hearing loss. One is to keep pushing back against it however I can. The second is to communicate my experiences to maybe put down a little pavement on the paths of others trying to deal with it.
NOTE: In Hearing Life Magazine this month (May/June) is an article I wrote to summarize what the gene therapy trial was for me. My hope is that it will reach a bit wider audience and perhaps capture the attention of others who were part of the trial. Privacy issues prevent me from knowing who they are, but they are free to contact me. I’d like to compile what the trial has been for those who participated. https://www.hearingloss.org/news-media/hearing-life/issues/