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.
This is very nice of Sampson to explain his situation, that he had went through. Also, it sounds like Dr. Kopell, is still in the witch hunt, to find a way to bring back a the device or something similiar, that can be used for helping us in sayiing bye bye to our Tinnitus,
Lets say a prayer, and keep our fingers crossed.
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.
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Lets say a prayer, and keep our fingers crossed.
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.
[ Reply to this Post ]
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