Thanks again to deafbuthopeful for posting detailed accounts of his experiences and treatments. We need more hope around here! (This was originally posted as a response to an old and lengthy thread, so I separated it out for others to access it more easily.)
Re: Constraint induced sound therapy.
Please be aware the study only selected users with less than 50db hearing loss. Profound hearing loss like mine were excluded because the patients would not hear a thing during therapy unless the volume was really high, which would cross over to the good ear anyway. I decided to do the therapy anyway since it costs nothing except time and hope.
Here's what I did:
1) I used headphones on a PC computer and set it to only output audio in the damaged ear. You do NOT want music to be coming into the good ear.
2) I used a standard ear plug (rated at 25db) and wore it on the good ear, and covered it with the silent headphone. The purpose is to filter out background noise.
3) I picked non aggressive music, like classical, orchestral, country, etc that tended to have a consistent volume. I think music that fluctuates at extremes of volumes is not useful. The study used classical music.
4) I used my good ear to find a comfortable listening volume. I did NOT try to raise the volume high enough for the bad ear to hear it. Instead, I chose a listening volume that should not damage hearing.
5) I used my good ear to make sure that 5-6 songs I was using had a consistent and safe volume throughout.
6) I switch the sound to the bad ear, and tried to do this therapy around 2-5hours per day. The study required participants to do it 6 hours a day, which may not be realistic for some of us.
7) Every chance I get I do the therapy, and I also test the volume every few hours to make sure nothing is changed.
8) Make sure the computer's volume is not too high.
9) I did not bother to equalize sounds the way the study suggests, since I could not hear any sound at all on the first few days.
10) Once I started to hear the music, I tried to compare it between left and right ears to gauge how bad the damage is. I also forced myself to pay attention to the music in the damaged ear to make sure my brain recognizes the song. Eventually even when it was really distorted I started to recognize the different distortions as specific songs.
Some key take away points:
- the theory behind my approach is that even if I was totally deaf, stimulation of the cochlea hairs has shown in cited studies to improve certain function and potentially promote healing (refer to the study's rational and discussion)
- as I started to hear a little bit, I would sometimes increase volume a little bit just so my brain knows something is there.
- Once I could distinguish that it was music, I started to play around a little bit with the equaliser to see if I could make my brain think it sounded more normal, as the study's participants were asked to do. I found this not too easy so I didn't focus on it too much.
- In my mind, even if my chance of any further improvement from here on out is very slim to none, I will continue this therapy to keep my brain trained to know the left ear is there and still trying to function. Part of the theory behind this treatment as I understand it is that as the brain cortex remaps its hearing function to the better ear it might not "pay attention" as much to the bad ear. My main concern here for all of us is that if our bad ear's nerve starts to recover and send signals to the brain, the brain might not be listening anymore to that nerve.
- I don't know if CIST helped me, I might have been saved by the intratympanic injections + HBO, but I think the theory behind CIST cannot be ignored, there's too much research behind injuries and cortex remapping that indicates enough correlation to take this seriously. I think for people who have less loss it should be a MUST TRY.
That's why I decided to go ahead with this therapy once I could hear just barely anything and even though it all sounded like distorted buzzing instead of music. But even before that, when I could hear nothing at all, I wanted to make sure the hairs were stimulated.
Here's an excerpt from the study discussion, keep in mind this is conjecture and theory, but based on cited research the theory makes some sense:
"Several studies have reported that sound stimulation dilates blood
vessels and increases red blood cell velocity in the cochlea 71–74 .
Improving the microcirculation of the cochlea could be effective in
limiting noise-induced hearing loss 75 . In the present study, the expo-
sure to music, which has complex spectral and temporal properties,
affected cochlea, and therefore may have dissolved the oxygen defi-
in the affected cochlea, by supplying oxygen and substances neces-
sary for restoration and by removing toxic substances, the increased
blood flow may support the recovery of damaged cochlear tissues.
necessary for the survival of the auditory nerve fibers, and may have
facilitated the repair of damaged auditory nerve fibers 76–78 . Electrical
stimulation in the cochlea of deafened guinea-pigs has also been
shown to promote survival of spiral ganglion neurons 79–81 , and the
combination of electric stimulation and neurotrophin infusion
appears to further improve and maintain hearing recovery 82,83 . The
music stimulation applied in the present study may also have facili-
tated both the neurotrophin release and the auditory nerve fiber
activation, leading to better hearing recovery in the SCT 1 CIST
group.Thefunctional recoveryofthe cochleaandtheauditory nerve
fibers of the affected side may be able to compete against the newly
establishing neural connections between the auditory cortex and the
intact cochlea. Thereby CIST may affect both the peripheral and the
central structures, and most importantly the interactions between
them. Without the peripheral improvement, afferent firing would
still be reduced, and the central structure would always seek supple-
mentary stimulation from the intact cochlea. Without the central
improvement (i.e. undoing the maladaptive reorganization), the
to breaking through this vicious cycle of peripheral damage and
maladaptive cortical reorganization."