Tinnitus, Deafness and Ear Problems Support Group
This group is for those coping with Tinnitus (ringing ears or ear noise), hearing loss, and all ear issues. Join to find support and get advice from others.
If you are desperate please read
pandabear2000
My tinnitus started a little over a year ago due to an infection in my inner ear. Most of the latest research points towards tinnitus being a problem of the auditory circuits within the brain and not necessarily within the inner ear itself. When my tinnitus began I would have rated its intensity as a 3, but over the last couple of days the intensity has increased to a 4 or a 5. I've put together a plan for myself to deal with the contingency of worsening tinnitus. It is as follows;
If my tinnitus reaches an intensity of 6-7 on a 1-10 scale my first line treatments will be to attempt the TMS that is already approved as a treatment for depression and for which trials are underway for tinnitus. There is at least one study out there which suggests that TMS can affect the regulation of genes. This may be its mechanism of action. I haven't researched it thoroughly as I just read about it yesterday. From the studies I have read about thus far, TMS seems to be effective in upwards of 60% of participants. I also like that it is noninvasive and without any obvious side effects.
There is also another trial in the works that involves delivering stimulation to the vagus nerve while playing tones that match an individual's tinnitus frequencies. This in sense,is training the neural areas of the brain not to be in an excited state at these frequencies. This is in trials and has been also met with good success with upwards of 60% effectiveness. This involves implantation of electrodes and wearing a small device for the course of therapy; it is obviously slightly more invasive than TMS.
My last option would be a rather extreme measure and involves partial destruction of some of the auditory areas of the brain. I would undertake this only if I felt that I was suicidal and would be OK without a sense of any hearing at all and also other possible neurological deficits. Research has shown that destruction of the inner ear is not enough in many cases to make any difference to tinnitus at all; this is because once the pathological neurological activity has set itself up, it persists in the circuits of the brain and not in the inner ear. Therefore if areas of the brain that are responsible for this abnormal activity are lesioned or destroyed, all sense of hearing and tinnitus should cease. Primary auditory processing happens in the primary auditory cortex on both sides of the brain. In this area certain portions are responsible for hearing certain frequencies, from low to high.
There is a targeted radiation therapy known as either gammaknife or cyberknife stereotactic radiation surgery. What it does is to send beams of either gamma rays or x-rays through the head from different sources which converge to the areas to be irradiated. To get to the point, I would consult with a neurologist and radio surgery center to have those primary auditory cortices partially destroyed. This would be a last resort option and one would lose their sense of hearing but along with that, the tinnitus as well. The maximal treatment areas with stereotactic radiation treatment is usually limited to a 3.5cm diameter area in the brain. The primary auditory cortices occupy a slightly larger area than this, but if the areas targeted were the areas responsible for high frequency sound and the goal was not to completely destroy the tissue but to damage it and render it non-functional, I believe radiation doses would be within relatively safe limits. It also should be noted that although one wouldn't be able to consciously hear sounds they likely would be aware of direction of sounds as more primitive processing happens in other areas of the brain as well.
This is a last resort type of option only for those that are on the verge of suicide. I think that with the right surgeon and a careful understanding and explanation of the tradeoffs, one could have a chance of getting some of their sanity back with this type of procedure. I know that if I ever reach that point this will be my last option and just wanted to share this with those out there who are on their last legs with this horrible affliction.
If my tinnitus reaches an intensity of 6-7 on a 1-10 scale my first line treatments will be to attempt the TMS that is already approved as a treatment for depression and for which trials are underway for tinnitus. There is at least one study out there which suggests that TMS can affect the regulation of genes. This may be its mechanism of action. I haven't researched it thoroughly as I just read about it yesterday. From the studies I have read about thus far, TMS seems to be effective in upwards of 60% of participants. I also like that it is noninvasive and without any obvious side effects.
There is also another trial in the works that involves delivering stimulation to the vagus nerve while playing tones that match an individual's tinnitus frequencies. This in sense,is training the neural areas of the brain not to be in an excited state at these frequencies. This is in trials and has been also met with good success with upwards of 60% effectiveness. This involves implantation of electrodes and wearing a small device for the course of therapy; it is obviously slightly more invasive than TMS.
My last option would be a rather extreme measure and involves partial destruction of some of the auditory areas of the brain. I would undertake this only if I felt that I was suicidal and would be OK without a sense of any hearing at all and also other possible neurological deficits. Research has shown that destruction of the inner ear is not enough in many cases to make any difference to tinnitus at all; this is because once the pathological neurological activity has set itself up, it persists in the circuits of the brain and not in the inner ear. Therefore if areas of the brain that are responsible for this abnormal activity are lesioned or destroyed, all sense of hearing and tinnitus should cease. Primary auditory processing happens in the primary auditory cortex on both sides of the brain. In this area certain portions are responsible for hearing certain frequencies, from low to high.
There is a targeted radiation therapy known as either gammaknife or cyberknife stereotactic radiation surgery. What it does is to send beams of either gamma rays or x-rays through the head from different sources which converge to the areas to be irradiated. To get to the point, I would consult with a neurologist and radio surgery center to have those primary auditory cortices partially destroyed. This would be a last resort option and one would lose their sense of hearing but along with that, the tinnitus as well. The maximal treatment areas with stereotactic radiation treatment is usually limited to a 3.5cm diameter area in the brain. The primary auditory cortices occupy a slightly larger area than this, but if the areas targeted were the areas responsible for high frequency sound and the goal was not to completely destroy the tissue but to damage it and render it non-functional, I believe radiation doses would be within relatively safe limits. It also should be noted that although one wouldn't be able to consciously hear sounds they likely would be aware of direction of sounds as more primitive processing happens in other areas of the brain as well.
This is a last resort type of option only for those that are on the verge of suicide. I think that with the right surgeon and a careful understanding and explanation of the tradeoffs, one could have a chance of getting some of their sanity back with this type of procedure. I know that if I ever reach that point this will be my last option and just wanted to share this with those out there who are on their last legs with this horrible affliction.
DGN is going to try the TMS.
One could also start with lower doses, say 1/4th that of what would be used to destroy a tumor, and see how that helps and then progress to the full destruction of the tissue if necessary.
anybody on this forum?
the person I was referring to is Dr Nagler, former chairman of the board of the American Tinnitus Association, aka stringplayer on the Tinnitus Support Yuku forum. He helped me a lot (along with a few others on that site) when I was in a state of desperation over T.
I could also add my grandfather to those with severe T who overcame, but of course he's not on any forums to talk to right now. Also, I'm not surprised there isn't anyone on this forum with severe T who has overcome...why? Because they don't give a rats tail about their T. They don't hang out on these forums because they don't need to. Though when they do visit from time to time, it's nice for the newbies and strugglers to have that encouragement. I hope I am not sounding too harsh, I just KNOW its possible to manage your T and overcome the desperation and I want you all to know you can too.
In addition, I have another condition that makes my ears feel plugged up all the time. There is a lot of really bad stuff going on in my head and my ears all the time. I don't notice that much, either (unless I'm really dizzy from it).
I have mastered the art of ignoring it. I don't listen it, so I don't hear it. Every mom who has had to tune out a screaming child knows that it is possible to ignore very loud noises.
Early on, I started forcing myself to listen to other things. I also buried myself in things I love to do. I think it was that very concerted effort on my part that became such a habit that I now do it without thinking about it.
When my T first started, it was probably a 4 or 5. When my rare ear condition (SCDS) started, my T jumped to a 6 or 7. After a failed surgery that was supposed to fix all of my ear problems, the T went to an 8 or 9. I was so good at ignoring the 4 or 5, I was bothered by the increases only for a short time.
So, when someone here asks whether it's possible to adjust to severe T, you can tell them there is at least one person on the forum who has severe T who isn't bothered by it any longer. Sure, I would absolutely love it if the T would go away. But my T causes me zero distress now.
I stay on this forum for the sole purpose of encouraging others. There is hope.
Turns out that in monkeys who had their auditory cortexes totally destroyed - they initially went deat yet regained some of their hearing shortly after.
You might want to read this:
http://psychology.utoledo.edu/images/users/74/Lesion%20studies/Neurobiology_of_auditory_cortex.pdf