Frequency Therapeutics — Hearing Loss Regeneration
- Thread starter RB2014
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Deathtotinni
Member
- Dec 21, 2017
- 157
- Tinnitus Since
- 9/10/17
- Cause of Tinnitus
- Qtip and maybe a sound..who knows
What do you mean about a bone gap? I don't understand?
I have called the clinic many times leaving my name and number. I keep asking to talk to the ENT doing the trial. But never get to going on, for two months now.
I have called the clinic many times leaving my name and number. I keep asking to talk to the ENT doing the trial. But never get to going on, for two months now.
Deathtotinni
Member
- Dec 21, 2017
- 157
- Tinnitus Since
- 9/10/17
- Cause of Tinnitus
- Qtip and maybe a sound..who knows
You need to contact the ENT office. Have you called the doctors' office or just the place holding the trial?
A bone gap means you could have conductive hearing loss which can be cured. Did they say you have hearing loss from nerve damage? If you have damage to the bone in your ear that can be fixed.
That also could be the reason why they aren't allowing you in the trial.
- Nov 25, 2015
- 1,705
- Tinnitus Since
- 11/2015
- Cause of Tinnitus
- Large caliber rifles&machine guns, +30 years of loud clubs
Yes I have contacted the ENTs office many times.
I also have had many CT Scans with all of them saying my bones in the ear look great.
I have seen 7 ENTs. I even went out of state. All saying the same thing, there is nothing they can do and they can't see anything wrong in the ear
I think my hearing loss is from noise over the years.
All the tests said no conductive hearing loss.
I also have had many CT Scans with all of them saying my bones in the ear look great.
I have seen 7 ENTs. I even went out of state. All saying the same thing, there is nothing they can do and they can't see anything wrong in the ear
I think my hearing loss is from noise over the years.
All the tests said no conductive hearing loss.
- Mar 22, 2018
- 90
- Tinnitus Since
- 08/2017
- Cause of Tinnitus
- Hearing loss (stress + virus activation)
The first file (with the tables) says (don't know if I read it correctly) that air is not as good as bone at the frequencies. So a middle ear problem could be a possible reason. But the difference is really small and the air bone gap is in the middle of the graph, not even worth a mention I think. I think it's no air bone gap. I just think the skull vibrations work differently as individual.
I visited nearly the same amount of ENTs like you and had a !40dB! air bone gap starting at 4kHz and up - only left ear. Every time they tested me I had 100% the same result - also tested it at different locations/ENTs/hospital - today after one year i would say I believe my airline more
sad but true, I put a lot of hope in that gap.
I visited nearly the same amount of ENTs like you and had a !40dB! air bone gap starting at 4kHz and up - only left ear. Every time they tested me I had 100% the same result - also tested it at different locations/ENTs/hospital - today after one year i would say I believe my airline more
sad but true, I put a lot of hope in that gap.
Keep in mind that I'm not a doctor when reading my interpretation below.
The "<" symbol represents bone conduction for the right ear. The "O" symbol (a circle) represents the air conduction for the right ear.
You can see on the graph that, for 250 Hz, the bone conduction is at 0 dB while the air conduction is at 25 dB. That's an air-bone gap of 25 dB.
This gap then closes down to 15 dB at 500 Hz then air and bone conduction track each other pretty well for higher frequencies.
Yes I have contacted the ENTs office many times.
I also have had many CT Scans with all of them saying my bones in the ear look great.
I have seen 7 ENTs. I even went out of state. All saying the same thing, there is nothing they can do and they can't see anything wrong in the ear
I think my hearing loss is from noise over the years.
All the tests said no conductive hearing loss.
I've had to show my CT images to over half a dozen doctors before one would spot something. Incidentally, it's when I went "out of network" that I found a doctor who was able to find something from the same images that everyone else had seen.
It could be that, "within network", doctors are biased to trust their other colleagues or/and unwilling to contradict them.
At any rate, conductive losses can be many things. For me it was otosclerosis, but it could be issues with the ear drum, or perhaps something that isn't that visible on a CT.
Based on what you are all saying, can it be fixed and if so how?
I know you're not doctors but you all know a lot.
Can it be fixed?
I will say one thing. My left ear drum is very painful to the touch. It has been for a very long time. Always have to be very slow with a Q tip. Just the left ear. Also when the noise gets lower at times, that ear feels full.
I know you're not doctors but you all know a lot.
Can it be fixed?
I will say one thing. My left ear drum is very painful to the touch. It has been for a very long time. Always have to be very slow with a Q tip. Just the left ear. Also when the noise gets lower at times, that ear feels full.
It depends what it is...
One recommendation I will have for you immediately is that you stop using Q-tips in your ears and stop touching your ear drum in any way, shape or form. Never stick anything into your ears, left or right.
Unfortunately you need to seek doctor assistance. Sorry if that hasn't proved very useful in the past, but nobody can help you over the internet, unfortunately.
- Mar 22, 2018
- 90
- Tinnitus Since
- 08/2017
- Cause of Tinnitus
- Hearing loss (stress + virus activation)
I'm not a doctor but I have to post some lines (and of course I might be wrong) from what I see your right ear is normal hearing and I cant see an air bone gap in your left ear concerning the 2 audiograms from the PDF.
Left ear has troubles beginning at 4 kHz and up. My audiograms look nearly the same only with more damage at 4 kHz but also with an air bone gap at 4 kHz.
The higher the frequency the more trouble has the bone conduction because it's limited! That's why it stops at 4khz but already at that frequency the measuring is unstable. The unstable measuring creates gaps - especially in the higher frequencies. That's the problem when you buy bone conduction earphones they deliver you the music very muffled/dull.
10 dB difference is from what I got told no air/bone gap.
I believe in the table entries because they produce a more or less stable point of view over 2 years. Why you had such a different result in your graph could be from a lot of things. The PDF entries look like standard high frequency hearing loss. I guess if you hand all that files over to Frequency Therapeutics they maybe prefer more stable/solid audiograms but I am not sure what the criteria are.
So don't panic and run in circles now from ENT to ENT. I would try to get a new audiogram your last one seems to be from 2016 and just talk to an ENT again about your concerns. I think if you want to be part of clinical trials it's always useful to have a complete history with audiograms year by year.
Concerning CT images not all ENTs have made (at least in the country I live) the same courses for "reading" those CT images - that's extra knowledge! Because they normally get the diagnosis from the doctors who make the CT. But the doctors who make the CTs look at other body parts too, not only the ear, so sometimes the ENT if he can read the CTs good is the expert. Most of the time those ENTs are also into middle ear surgery.
Again I am only a patient, not an ENT! I just had to write here because the gap discussion seems similar to mine one year ago and that's what I got as answers around my strange gaps. Hope that helps you but go to an ENT to have a more valuable source for your questions.
As @GregCA already mentioned stop the Q-tips stuff! There are lots of bad things that can happen to your ear canal and ear drum
Left ear has troubles beginning at 4 kHz and up. My audiograms look nearly the same only with more damage at 4 kHz but also with an air bone gap at 4 kHz.
The higher the frequency the more trouble has the bone conduction because it's limited! That's why it stops at 4khz but already at that frequency the measuring is unstable. The unstable measuring creates gaps - especially in the higher frequencies. That's the problem when you buy bone conduction earphones they deliver you the music very muffled/dull.
10 dB difference is from what I got told no air/bone gap.
I believe in the table entries because they produce a more or less stable point of view over 2 years. Why you had such a different result in your graph could be from a lot of things. The PDF entries look like standard high frequency hearing loss. I guess if you hand all that files over to Frequency Therapeutics they maybe prefer more stable/solid audiograms but I am not sure what the criteria are.
So don't panic and run in circles now from ENT to ENT. I would try to get a new audiogram your last one seems to be from 2016 and just talk to an ENT again about your concerns. I think if you want to be part of clinical trials it's always useful to have a complete history with audiograms year by year.
Concerning CT images not all ENTs have made (at least in the country I live) the same courses for "reading" those CT images - that's extra knowledge! Because they normally get the diagnosis from the doctors who make the CT. But the doctors who make the CTs look at other body parts too, not only the ear, so sometimes the ENT if he can read the CTs good is the expert. Most of the time those ENTs are also into middle ear surgery.
Again I am only a patient, not an ENT! I just had to write here because the gap discussion seems similar to mine one year ago and that's what I got as answers around my strange gaps. Hope that helps you but go to an ENT to have a more valuable source for your questions.
As @GregCA already mentioned stop the Q-tips stuff! There are lots of bad things that can happen to your ear canal and ear drum
The air-bone gap I saw was in the other document: the jpg file with an actual graph (dated 2/23/16), not the data from the PDF doc.
I think you need a recent audiogram, then another 6 months after. I know someone in the forum can't get in because of not having a 6th month audiogram.
Hope you can get an updated one. Send it and see what they say.
- Mar 22, 2018
- 90
- Tinnitus Since
- 08/2017
- Cause of Tinnitus
- Hearing loss (stress + virus activation)
The latest audiogram was second page in the PDF from 08/15/2016 which seems to be his current situation.
It looks like the 2 audiograms in the PDF and the 1 audiogram in form of a graph are from two different patients. They don't fit together but you have to combine them to give any advice. Don't know what went wrong but most likely the data from the PDF is correct because it looks stable in 2 years, but who knows, he needs more audiograms.
Please, don't get me wrong!
For him it was important to see that something with the audiograms is not clear and that's maybe also the problem for Frequency Therapeutics.
I think it's from the same person though (that's what @Markku said if I'm not mistaken).
Perhaps there was an issue during the 2/23/16 test that showed an air-bone gap on that day (wax? perforated drum? testbed issues? audiologist mistake? who knows...)
- Mar 22, 2018
- 90
- Tinnitus Since
- 08/2017
- Cause of Tinnitus
- Hearing loss (stress + virus activation)
I said it looks like a different person
Because it's so different! I think that's getting off topic now, sorry. Dont know what happened to the graph audiogram.
From my experience i had 12 audiograms in one year and 2 were wrong even from an ENT so that could happen.
I don't see what you find so unusual with audiograms, two audiograms, where later indicates worsening of hearing, in particular widening of air bone gap.
I would say it looks like early onset of otosclerosis.
Would be interesting to see results from 2017/2018.
I would not sign up for a trial with such a minor hearing loss, especially if it turns out to be otosclerosis.
I would say it looks like early onset of otosclerosis.
Would be interesting to see results from 2017/2018.
I would not sign up for a trial with such a minor hearing loss, especially if it turns out to be otosclerosis.
- Mar 22, 2018
- 90
- Tinnitus Since
- 08/2017
- Cause of Tinnitus
- Hearing loss (stress + virus activation)
OK I give up. it's otosclerosis or anything else in an early stage and seems to be getting worse. You won.
Last audiogram shows 10 dB air-bone gap at 4 kHz... Lower frequencies normal hearing.
I am not that brave and give any fast diagnosis on such inconsistent audiograms. I think that's dangerous.
Last audiogram shows 10 dB air-bone gap at 4 kHz... Lower frequencies normal hearing.
I am not that brave and give any fast diagnosis on such inconsistent audiograms. I think that's dangerous.
I said it looks like a different person
It's exactly because you know it's the same person and "it's so different" that it warrants digging (since there is such an outlier).
In my case, I had audiograms radically different within about 6 weeks' timeframe, with a 50 dB air-bone gap difference between them (one didn't show any AB gap, the other one 50 dB). No doctor has been able to explain how a 50 dB Air-Bone gap could have appeared in just a few weeks, yet there it was.
One theory that was suggested was that the earlier tests that didn't show any AB gap had been poorly performed by the audiologists (who knows - there was a couple of tests 2 weeks apart and done with 2 different audiologists that didn't show any AB gap, so I doubt 2 independent data collection events would be bogus but it's not impossible).
I know you're not addressing me (I think), but you're looking at it from the wrong angle: it's not a matter of winning. Nobody wins anything: the person who has the most at stake is the patient. It's a matter of helping the patient bring up "odd data" to the attention of his/her doctors so they can decide what to do next to disambiguate: perhaps a couple of new hearing tests within a couple of months would help confirm that it was just a measurement error.
At any rate, it's not a diagnosis (don't take it as such). Leave those to doctors.
- Mar 22, 2018
- 90
- Tinnitus Since
- 08/2017
- Cause of Tinnitus
- Hearing loss (stress + virus activation)
Sorry I got that wrong, English is not my mother tongue, I really try my best! Heat of the battle!
Wow, why do you focus on me?! No I did not address you. Margus said I interpret the audiograms wrong and that it's the beginning of otosclerosis and that it's getting worse and you tell me I should leave diagnosis to the doctors???
The only advice I gave is that the audiograms look weird and he should update them... I never mentioned any diseases yet only ear canal or eardrum problem concerning high frequency gaps!
You do me wrong
but if you wanna focus on me, you can also follow me, I am new here 
@rid0871 asked me to copy paste the below e-mail he received re: the trial. He had technical issues doing so.
Date: Tuesday, September 25, 2018, 11:36 AM
Mr. Kelly, I apologize for the delay in getting back to you, but today was the first I have seen your audiograms. I just had the doctor do a review of them and although it shows the loss of hearing, it does not meet the severity of hearing loss we are needing for the study.
This study is a Phase 1-2 study strictly looking at the safety of the drug and is placebo controlled.
We are hoping there will be future phases of this study coming soon and that the criteria won't be as difficult to enroll.
As you can imagine, we have received thousands of referrals and interested patients for this project, but to date we have only enrolled 19 subjects, with the last few being enrolled this Thursday.
Upon completing the study this week, the data will be reviewed over the next few months and if everything proves to be safe, the follow up studies will be developed and enrolled.
This information will be available on Frequency Therapeutics website.
Thank you for your interest and for being patient during this process. Take care.
Director of Clinical Research
Alamo ENT Associates
Mr. Kelly, I apologize for the delay in getting back to you, but today was the first I have seen your audiograms. I just had the doctor do a review of them and although it shows the loss of hearing, it does not meet the severity of hearing loss we are needing for the study.
This study is a Phase 1-2 study strictly looking at the safety of the drug and is placebo controlled.
We are hoping there will be future phases of this study coming soon and that the criteria won't be as difficult to enroll.
As you can imagine, we have received thousands of referrals and interested patients for this project, but to date we have only enrolled 19 subjects, with the last few being enrolled this Thursday.
Upon completing the study this week, the data will be reviewed over the next few months and if everything proves to be safe, the follow up studies will be developed and enrolled.
This information will be available on Frequency Therapeutics website.
Thank you for your interest and for being patient during this process. Take care.
Director of Clinical Research
Alamo ENT Associates
Rings-a-Bell
Member
Anyone know how severe the hearing loss has to be? 55 dB at 4 kHz enough? Or do you need to actually be to the point where you are reading people's lips?
- Mar 22, 2018
- 90
- Tinnitus Since
- 08/2017
- Cause of Tinnitus
- Hearing loss (stress + virus activation)
I also was thinking about that because I have a lot of dB (80+) to regain at 4 kHz and above
This reminds me about that Reddit post again a few pages ago in this thread saying that if you have too much loss (I think it was severe to profound?) the treatment might not work. We already had a discussion about that.So do they mean the severity of hearing loss in a particular frequency (dB) or that it is in that speech zone ENTs call it. I have trouble to interpret the word "severity". From 250 Hz to 4000 Hz, that would be the speech zone, also the area where later on measuring would be more reliable for results.
My question would be, if this is just a safety study then why does it matter how much hearing loss the subject has?
It's enough, the hearing loss needs to be above 3 kHz and has to be stable on both audiograms.
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