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.
I wrote to Sampson Parsons, who was the patient who had to remove the device from his head, because of no replacement batteries, and the comapny had closed down
Hi Daniel,
After my successful implant was removed (funder of the clinical study went bankrupt), I tried a combination masker/hearing aid device. As soon as I put them in my ears, the tinnitus went away. I purchased regular hearing aids because I had no need for the masker option, and now whenever I put them in my ears, I have little to no ringing. I passed this information along to the research nurse from my clinical study, and she passed it along to the other 7 participants. One of them tried hearing aids, and he had the same success I had.
I urge anyone with tinnitus to try hearing aids. My doctors think that our brains sometimes create noise to compensate for even a minuscule amount of hearing loss at any frequency. Using hearing aids supplies the brain with whatever frequency the brain was not getting from the environment otherwise, and the ringing stops. It won't work for anyone, but if you are as desperate as I was, it's certainly worth a try. You can find out quickly just by making a hearing aid consultation appointment with a good audiologist. He/she will typically allow you try "demo" hearing aids for a few days.
Thanks for writing,
Sampson Parsons
Hi Daniel,
After my successful implant was removed (funder of the clinical study went bankrupt), I tried a combination masker/hearing aid device. As soon as I put them in my ears, the tinnitus went away. I purchased regular hearing aids because I had no need for the masker option, and now whenever I put them in my ears, I have little to no ringing. I passed this information along to the research nurse from my clinical study, and she passed it along to the other 7 participants. One of them tried hearing aids, and he had the same success I had.
I urge anyone with tinnitus to try hearing aids. My doctors think that our brains sometimes create noise to compensate for even a minuscule amount of hearing loss at any frequency. Using hearing aids supplies the brain with whatever frequency the brain was not getting from the environment otherwise, and the ringing stops. It won't work for anyone, but if you are as desperate as I was, it's certainly worth a try. You can find out quickly just by making a hearing aid consultation appointment with a good audiologist. He/she will typically allow you try "demo" hearing aids for a few days.
Thanks for writing,
Sampson Parsons
Alot of people would take a risk like that, to have silence.
Also WHY was the device they implanted such a financial"loser" that they went out of business if the darn thing WORKED??.. It would be a miracle for most on this forum to have a device like this, that actually rid us of this demon we have in our heads. I would pay whatever the cost of it, to be free of this wretched condition... They found a truly effective treatment fo severe tinnitus, and just dropped it?.. No one else wanted to buy the rights???.. It all seems surreal to me... They would have sold every one they could manufacture. bob
Look at the fact that such a long time ago, they actually found a cure for tinnitus
I know the surgery was dangerous, but if another company could had took over for this company, I am sure they could had made the surgery, alot safer by now.
I am so surprise, that no other comapany jumped in on wanting to take over this technology, that actually makes your tinnitus go away
All these years have past, and nobody seems interested on expanding what seems to me, to be a successful fix, to tinnitus
The wretched suffering of hundreds of thousands, maybe even millions could be eased, and they ran out of batteries that fit???. WHAT?????... again, please forgive my incredulity. bob
Regarding the batteries: even if I could have found batteries that would have fit inside the implanted generator (in my chest), the battery replacement surgeries needed every 8 months or so, cost around $15,000 each. There was no insurance involved in the clinical study - they don't cover experimental. Even so, the doctors and I wrote several appeals to my insurance carrier, unsuccessfully.
Regarding the surgery vs. hearing aids: None of us knew hearing aids would help.
My brain: Nothing ever touched my brain, and it wasn't DBS (deep brain stimulation). It was a fairly simple surgery, really. The only real risk was an infection.
The dumping of the device: Northstar's investors lost millions and millions of dollars doing R&D. The SAHALE study of the "Renova" device that I was in only had eight people, and not all had reduced tinnitus, so there wasn't much incentive for someone else to pick it up (yet) because of the cost of pursuing FDA approval. The device was really in the earliest stages of trying to get FDA approval, and no one had the cash to continue it.
Dr. Kopell was/is so genuinely interested in helping tinnitus patients that he became an employee of Northstar to further the development of the device.
Dr. Kopell is still interested in tinnitus treatment with an electrical implant. He is trying to determine a more informed method for choosing the location of the electrodes. He wondered if placement was the reason some patients responded and some did not.
I participated in an imaging study for him before and after the device was removed. His recent findings are here: http://www.mcw.edu/FileLibrary/Groups/Biophysics/ISMRMAbstracts2011/4209_Gaggle_Cortical_stim_therapy.pdf
Hopefully, Dr. Kopell's NIH grant applications, with the added results of the imaging study, will allow him to bring the device back for more patients. I will certainly post immediately if I hear about it.
I fully expect to be in that 40%...
I am really glad you have found some relief with hearing aids... bob