Well, more accurately it should be Dancing “In” Limbo….because that is pretty much where I have been since it became clear that I was not going to be one of the individuals that had marked…
Browsing Category The Gene Therapy
This section is my chronicle of the path up to the gene trial surgery and then the surgery process itself and follow up evaluations and testing to see if in fact there has been a hearing change for the better or worse. Included will be what I learn about the study itself and the other participants in the trial.
A Fork In The Road
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…
More Research -Addendum
There was an error in the link included with “Can You Hear Me Now?” posting….my apologies. For those interested in some of the other work being done ( is just as exciting and hopeful as…
Can You Hear Me Now ?
The answer is: a little bit. A little bit better. This last trip to Kansas City Medical Center was remarkable…. Not just for the test results either. These tests verified that I have had improvement…
Let’s See If It Sticks
My surgery implanting/dosing my right ear with the genes to possibly repair my hearing took place on Halloween- 10/31/18 and I just returned from Kansas City for my 60 day post-op testing. It is hard…
Waiting Is The Hardest Part
At least that’s what everyone says ! And waiting I am. On November 29th 2018, thirty days after the surgery, I went back to Kansas City for an intensive round of hearing and vestibular (balance)…
Mechanics and Magicians
The genius mechanic has done his job, now its time for the magic ! Yesterday Dr Heinrich Staecker performed my gene therapy procedure. He is the one who designed how to surgically infuse the inner…
Its a little “scary” …
Oct 11, 2018 Kansas University Medical Center Just finished the last round of pre-surgery screening tests in Kansas City. MRI and meeting with Dr Staecker the lead researcher and the surgeon who developed the procedure…
So far so….
…good My first trip to Kansas City and Kansas Univ Medical Center (KUMC) was Sept 10th. This was to meet members of the research team and go through a battery of tests to further screen…
A little bit about…. My Hearing Loss
To put the clinical trial in some context it seemed like a good idea to baseline how I found myself here on the verge of gene therapy. I lost my hearing late in life. Am…