Hough Ear Institute's Hair Cell Regeneration Project
- Thread starter all to gain
- Start date
Given that this medicine is still in efficacy trials, it would be wise to have an open mind as to the relief offered. It could be a functional cure for some and a slight aid in others.
As we understand, this particular drug is not intended to target tinnitus specifically as a symptom and so to expect it to cure the ailment is a little steep.
Don't lose heart if this particular treatment yields disappointing results for tinnitus sufferers, for it is but one treatment and is one of at least two that Hough Ear Institute is developing. The other being an injection meant more for hearing loss and so potentially tinnitus.
What happened to your appointment with Dr. Kesari? Did you or are you in the process of acquiring the drug?
Thank you.
IntotheBlue03
Member
Hi @Eliot Martin.
Unfortunately not yet due to the fact that the oral administration is not available in the US yet and the IV administration is not in my area. Dr. Kesari is meeting with Oblato regarding this soon so he advised me to check back in with him over the next 2 weeks to 2 months. I will be following up of course.
Member- Nov 29, 2014
- 211
- Tinnitus Since
- 10/2007
- Cause of Tinnitus
- Acoustic trauma - Repeated gun blasts
While I hope it helps you, I believe the drug was developed to treat tinnitus and hearing loss stemming from noise causes. Best of luck.
IntotheBlue03
Member
Thanks @OptimusPrimed, I appreciate that. We will see how far I and others get at this point, hoping we aren't held back by too much regulation or red tape.
@IntotheBlue03, just got off the phone with Dr. Kesari. He said the same type of thing to me. We have to wait a month or two and see what the company says because they are definitely aware of its potential to treat hearing disorders. He put me on a list. He said to check back in a while and hopefully we can get the IV or pill form. He said the IV is better, pill form needs some work.
I still ask anybody reading this, do not blow up Dr. Kesari, we need to bring the worst patients to him, and get in the compassionate use trial for the drug. Too many contacting him will ruin it. As of now, since me and @IntotheBlue03 contacted him, nobody else do anything yet. We will let you guys know what the deal is in the next month or two. Once Oblato figures it out, then start contacting your doctors. Let's hope this drug helps.
I still ask anybody reading this, do not blow up Dr. Kesari, we need to bring the worst patients to him, and get in the compassionate use trial for the drug. Too many contacting him will ruin it. As of now, since me and @IntotheBlue03 contacted him, nobody else do anything yet. We will let you guys know what the deal is in the next month or two. Once Oblato figures it out, then start contacting your doctors. Let's hope this drug helps.
Excuse me, who are you to select which cases should be brought to Dr. Kesari?
I am as desperate for help as you are (or more) and I certainly won't sit back and wait just because you say so. My consultation is scheduled in a few weeks.
- Aug 7, 2021
- 1,528
- Tinnitus Since
- 2012 (mild) & 04/2021 (severe)
- Cause of Tinnitus
- Ototoxicity (2012) Unknown-likely noise induce (2021)
How are you feeling after the phone call? Were you able to handle it well?
Lol l love your tone. In case you haven't read my story, go read it... Tinnitus is the least of my worries right now.
#1 if you're just suffering from tinnitus, don't talk to me like that.
#2 my pain hyperacusis would make you cry like a child.
#3 I have had tinnitus and have had tinnitus for many many years.
#4 Pretty sure nobody here would have contacted Dr. Kesari if I had not have said so. I was looking into compassionate use since November. Nobody did crap until I said to do it. The only person who can talk to me like that will be the gentleman who posted the compassionate use article.
#5 tinnitus sucks, I hate it, it can ruin your life, but having so much pain that you're literally having seizures and throwing up, lost your career, your money, your friends, your entire life, 30 pounds of weight gone, I'm pretty sure you got no place to talk buddy. Unless your tinnitus is 10/10 severe, so loud it sounds like a jet. Even then you're probably not in pain. This is very controversial because way fewer people have pain hyperacusis but it is much worse.
Do you even know everything about this drug? I bet you don't know its properties, and what kind of regenerative potential it has. You probably will look this up before you respond.
Take a chill you whiner, I didn't say for anybody to not get the drug. I said for people not to keep hounding him, @IntotheBlue03 and I both posted he can do nothing but wait months for Oblato to figure out what they're doing. No use hounding him. I'm only desperate to get this because this condition might actually kill me. Not panicking because I can't sleep at night. So relax and watch who you're talking to.
Yeah I know. Once Oblato figures it out and contact me I will let everybody know right away.
I was on Zoom and had subtitles on. I heard his voice for a minute or two. Pretty painful. But got through it. Had to get it done.
I talked to somebody from Oblato. They are not starting Phase 2 for a long time. He didn't say the exact reason. He mentioned the compassionate use and that's it for now.
Yeah I know it is, but they're still doing trials using the drug for other conditions so could get FDA approval that way. I'm just getting the drug for compassionate use because if I don't do something soon, I will probably die. I think good things to be hopeful for are OTO-313, OTO-413, FX-322, PIPE-505, and SPI-Ebselen. Who knows what will happen with these drugs.
- Apr 23, 2019
- 364
- Tinnitus Since
- 04/2019
- Cause of Tinnitus
- Slap to the ear / Leading to more issues after ear surgery
Did you get approved for compassionate use? They told me the same thing. But the process seemed difficult to fill out yet. I'm also seriously suffering and suicidal some days.
In a sense, compassionate use patients are the beginning of testing the efficacy of the drug. Really people here are likely good candidates in general for such a role. Be proud and hopeful in your actions. I thank you for you guys giving this medicine a chance.
Damn Scotty, sorry to hear. Well, since most doctors don't know about this drug I think Dr. Kesari is our best bet on getting it. He is very understanding and he said he is waiting for Oblato with the final details, then will start getting the drug. He's figuring out if he can get the pills or IV and if he can get the IV shipped to our local doctor.
He's going to let me know in a month or so. I will be posting here when I hear back.
And yeah, the process is a ton of work for the doctor and that's why when everybody on this forum was most likely blowing him up I was getting upset because I know he doesn't want to fill out a crap ton of compassionate use paperwork when he's got patients with brain tumors to work on. I didn't want to overload him and cause him to not want to deal with us altogether. Hopefully this does not happen.
I believe to fix my catastrophic pain hyperacusis I definitely need synapse regeneration. My tinnitus is pretty shit too. If your main ENT is Dr. Foster in Miami, and if this drug starts rolling out for compassionate use, maybe he will be on board. Because if it's an IV you have to get it at the doctor anyways. Dr. Foster did know about regenerative medicine for the ear, so if I do get the IV, I will probably have it done there or at Silverstein.
- Apr 23, 2019
- 364
- Tinnitus Since
- 04/2019
- Cause of Tinnitus
- Slap to the ear / Leading to more issues after ear surgery
California. He does Zoom calls though. I'm trying to get Silverstein on board for the drug so we could probably get it there if they do IV. I think Dr. Kesari could also contact Silverstein and tell him what to do.
- Apr 23, 2019
- 364
- Tinnitus Since
- 04/2019
- Cause of Tinnitus
- Slap to the ear / Leading to more issues after ear surgery
Dr. Foster retired I believe. But I live in MA now anyways...
Let's only hope so and that we see some positive results. I might even go to South Korea to visit Dr. Minbo Shim.
Money isn't an issue, my suffering everyday really is. I also have severe hearing loss in my right ear and hyperacusis and of course tinnitus. I have to sleep with my hearing aid in, otherwise I can't sleep due to the tinnitus being so loud. FML.
- Jul 7, 2020
- 403
- Tinnitus Since
- 05/2020
- Cause of Tinnitus
- Unknown/Stress
Hough Ear Institute are wasting their time moving at a snail's pace. Unfortunately it does not seem like progress towards a meaningful clinical trial is being made.
Hello everybody.
I have read this long thread, but one thing is still not clear to me: will this treatment (assuming it works) also work with cases of sensorineural hearing loss? Or only with the noise-induced cases?
I have read this long thread, but one thing is still not clear to me: will this treatment (assuming it works) also work with cases of sensorineural hearing loss? Or only with the noise-induced cases?
I believe it was originally intended for acute noise induced hearing damage. But to be honest I don't even know if Hough Ear Institute knows what the drug is capable of what it will be able to treat.
Assuming if people with sensorineural hearing loss have damaged hair cells just like some people noise induced I don't see why not. A lot of people on this forum suffer from noise induced tinnitus and don't even have hearing loss.
Hi everyone. Please inform us if you succeed applying for expanded access and if you get to use the drug. All people suffering from hearing loss and/or tinnitus are dying to know if it works. Please share your experience. Thank you very much.
Who is the new Justin De Moss equivalent at Hough Ear Institute now? It would be nice to have them update us. I saw an image they shared on their Twitter a while back that showed cochlear hair cells that they grew from their lab.
This should be the lady:
ASHLEY EVERETT
Philanthropy Coordinator
3400 NW 56th Street, Oklahoma City, OK 73112
d 405-639-2856 | m 405-534-6100
ASHLEY EVERETT
Philanthropy Coordinator
3400 NW 56th Street, Oklahoma City, OK 73112
d 405-639-2856 | m 405-534-6100
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