FREE Hearing Loss online conference continues today June 18-19

@colleenyoung
Hi,
I just want to say that I viewed the HHLA webinar on Thursday about hair cell regeneration. There was an opportunity to ask questions after the speakers had said their piece. Noon to 1:30 on Friday is about Tinnitus. This is Eastern Standard Time I believe. I didn’t know there were clinical trials going on about a drug called FX32 (I think that’s the right term) that could be injected into the cochlear and it has shown promising results. What an eye opener. I think you can get a transcript of the 2 day conference. There is more info on the site after you briefly register.
I won’t be home for Friday’s presentation but I am going to see if there is a transcript available or if we can watch it at a later time.

FL Mary

@imallers Ouch right into the cochlear an injection that sounds as bad as the injection into the eye

@lioness, yes, it sounds scary but would be worth it if offers a cure. People with cochlear implants may have an advantage since there is an electrode array already inside the cochlea. Perhaps the delivery method would not require an injection???
Tony in Michigan

@tonyinmi
Hi,
I learned on Thursday that people with Cochlear implants are not candidates for the injections. Also it is only for people with acquired sensorineural hearing loss which they estimate is 90% of the population with hearing loss. The ear has to be healthy...no damage to the tympanic membrane. There are a lot of considerations as to how the fluid in the inner ear would interact with the fluid in the injection, whether a person has Menieres, what other drugs a patient is taking etc.

This is probably 5 to 10 years in the future and the clinical trials are for 18 to 65 year olds right now which are a lot of people with this hearing loss. If you have a CI in one ear you could inject the other ear. More considerations as to whether the injection is a one shot deal or a series or is ongoing.

What they basically found was that in the cochlea there are progenitor hair cells right next to the hair cells that receive sounds. In all mammals except humans, these progenitor cells send a signal to the deteriorated hair cells to regenerate. In humans, the progenitor cells act only as support for the other cells. This drug seems successful in generating a signal to wake up the other cells. They are doing double blind trials and have not experienced the placebo effect of some clinical trials in general. You can’t think you hear better if you didn’t get the drug. Your word recognition is tested and people who received the drug had improvement. Not sure how much. I got most of the info from the Q&A session afterwards.

@lioness
I get eye injections...my eye is numbed lol. I guess they would numb the ear. I would be the first in line for a clinical trial if I could.
What a major breakthrough this is.

FL Mary

Strongly suggest you to to http://www.experiencehlaa.org or to the HLAA website at http://www.hearingloss.org to learn more about this. Steroid injections are often given to people with sudden hearing loss. They are hoping to find a drug that will regenerate the cells in the inner ear that die and create sensorineural hearing loss. This clinical trial is called FX322. Researchers mentioned that you can find ongoing clinical trials at http://www.clinicaltrials.gov Many participants were interested in learning how or if they could participate in the trials. Today they will tell us what is being done in tinnitus research. The presentation is from 12 - 1:30 Eastern time. http://www.experiencehlaa.org just go to the site and click on 'register'. How fortunate we are today, to have this kind of research happening.

Thank you for this terrific review of the information provided here. The presentation was fascinating. Until 1988 when the National Institutes of Health established the National Institute on Deafness and other Communication Disorders (NIDCD), very little research was being done in this area. The prevailing attitude was that the ear & hearing organs were inaccessible due to placement in the brain. Sensorineural hearing loss was called 'nerve deafness', and it was assumed that the auditory nerve was dead. Lo and behold, it wasn't dead in the majority of cases. It was not being stimulated due to the failure of hair cells in the cochlea. Enter cochlear implants that have been able to bypass the cochlea and stimulate the auditory nerve and get sound signals to the auditory center of the brain for interpretation. Anything is possible. So thankful this kind of research is being done now.

I hope the presentation on tinnitus will be just as enlightening and hopeful.

@imallears, I did watch the presentation on hair regeneration. It was interesting. I was probably one of several that asked about the target audience for who would benefit from this therapy. It was a bit disappointing knowing that their targeting those with age related loss. My loss is hereditary but my hearing continues to get worse as I age so there may still be hope. In my case, genetic stem cell research may be my best hope for a cure.
Tony in Michigan

@tonyinmi
Lot going on in stem cell research for so many many years. Someday there will be bionic ears....maybe not in our lifetime though. At least you keep up to date on what is happening out there. It is good to see that science is taking hearing loss seriously. I would personally like to see holograms hover above peoples heads as they talk.....maybe no so science fiction-ist at all. Or maybe we could make 3D copies of the cochlea and someone would invent a way to remove the old and put in the new.
In my opinion, there must be a reason why the Creator gave the cell regeneration ability to all creatures except humans. Now there's food for thought whatever your belief system is.

Still pondering in Florida where the city of Tampa and Orange County have now mandated masks in public. Our governor won't do that but individual municipalities can.....Mary

I agree, @julieo4. Thanks @imallears for providing a summary of the session you attended. I hope others will report back their learnings from sessions that inspired them.

In response to all the posts about regeneration of hair cells: I have Meniere's, was unilateral for almost 40 years, until a year ago, when I went bilateral in a big way. Initially, the greatest problem was hearing, as I went from having no useful hearing in my right ear (dead hair cells due to four years of 12-15 hour crises up to three times a week, to not being able to hear much of anything with my left ear, which only had had age-related deafness. Even with my aid, most of the time I was able to hear only whispery or raspy sounds without and distinct words. In December, the balance half kicked in with the first vertigo multi-hour crisis Christmas Day, and crises increased until I had vertigo all the time with frequent crises. A little over a month ago, I finally found a local doc willing to prescribe large doses of HRT (I'm 77), and for the past three weeks I've had zero vertigo, no crises, and, voila, hearing is far less bad in my left ear. I'm no longer totally dependent upon closed captions, I can use the phone, I can hear much of what people say if they're within 20 feet of me. It's not as good (or "unbad") as it was before I went bilateral, but it's a huge improvement. I know that crises kill hair cells, but there's also the fact that with Meniere's hearing fluctuates, not only from day to day but from hour to hour. So, apparently, I didn't lose as many hair cells as I had feared. during the past year. I'm afraid to say that I've achieved a remission, but I've already started tapering down the HRT very slowly. I am one happy camper as I can move my head without intense vertigo, do all normal activities, and hear--as a bonus! The hearing aid is back to only offering an slight increase in sound, and I haven't had any days where I wasn't able to wear it due to recruitment. Both distortion and recruitment have disappeared...at least for right now. All day every day, I am incredibly thankful.