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 for me to believe that I am actually writing this, but there is a measurable hearing improvement at lower frequencies in the treated ear. Mind if I repeat that?…. There is a measureable hearing improvement at lower frequencies in the treated ear.
Now, its not dramatic. It’s a “little” improvement. Its not life changing. It’s not World Changing…but it is.
About a week ago I was asked how I “felt” about all of this. What was I hoping for?
I said outloud, “Ya know, I am pretty much dialed in that I am not going to be one of those in the gene trial that gets significant improvement. But I want to be clear that I am going to be OK with that.”
Now today, I am not quite sure what I feel. The urge to be far more hopeful is awfully strong though. J
There are 23 of us humans who have had the surgery (I am number 19—thought I was 20, but apparently a surgery at one of the other centers didn’t happen after all)
Of the group, a “few” of us have had measureable changes. There is other anecdotal data that says one of us could hear water going down the drain in the shower, and had never heard it before. Another said he had a conversation with his wife in the other room ….and didn’t realize it until afterward. He had never been able to do that.
Some seem to be having slow ongoing improvement. For others, it seems to be transient …. Comes and goes. For the man talking to his wife in the other room-it didn’t last.
I have no idea yet what category ultimately will fit me, but I do know that there is something going on inside my ear…and its important.
This time at the Kansas University Medical Center I got a better idea of what a shot in the dark this initial trial really is. I had a chance to spend a little more time with Dr Staecker who designed and did my surgery and really got a sense of how far out there we are.
I learned that the primary goal of this early trial is to establish two things : that it is safe and to achieve proof of concept. Remember, this is not a large trial with a control cohort – Its just small group of us all getting the gene and waiting to see what happens.
The research teams have high confidence in the gene. They know they have the right gene. They have matched it in animals and humans. The challenge is how best to reintroduce the gene to the nerve hairs that need repairing. This current trial uses a virus as the “vector” to deliver the gene. The researchers are using super-computers and AI to examine all the cellular and genetic data to try to “map” all of what is in the fluid in the inner ear and exactly what the cell structure is in and around the nerve hairs. Hopefully it will add a predictive component to diagnosis and a precise delivery method.
Its stunning really , what they are trying to do. Maybe this will illustrate just how early and primitive this initial trial is though- compared to what is coming. Say these cooks have developed a really terrific spaghetti. It has all the right qualities for taste and nutrition. They are still experimenting with how long to cook it and how to serve it, but they know it is GREAT spaghetti.
So far they have decided to cook it for awhile and get a virus to throw it against the refrigerator and see if it sticks.
In my case, it looks like it stuck….. at least for awhile. Stay tuned.
Rip, here’s hoping the positive signs continue! All the best for 2019.
Wow – excellent start! We are so happy to read your encouraging thoughts. Love, TheMcDonald’s
What an exciting development in this ground breaking “moon shot” you are taking. Looking forward to the on going updates with hopes for continued progress for you & your fellow cohorts. Best of luck in 2019, Rip.
Thanks for sharing this…fascinating!
My cousin, Tab, sent me your way. So glad to read this update and grateful for your willingness to participate and share the journey. I’m hopeful the therapy will work so I can volunteer myself for the next trial!