The Broaden study is gone and most participants I know are no longer in touch with their centers. There are a few centers who have offered to stay in touch, but nothing formal. Emory is the only place I am sure is still conducting research. (Please let me know if there are others).
So where do we go from here? There is no checkbox on the life insurance application for "Have you ever had a device implanted in you to shock your brain?" So what do you do? Under Affordable Care, is this a pre-existing condition and should then be covered under their plan? I joked about it last blog but it will be a reality for many of us. My primary care doc is fully aware and would write letters in support of the study (yes, I'll admit I have responded well, as many of you have guessed over the years). I have a number of other inherited medical issues - DNA is a wonderful thing. (Auto-immune - but I'll leave it at that).
So the specialists I see ALWAYS have questions. Some stay on the medically necessary track while others have been extremely interested in every facet - including how others have done, etc. But again, if I apply for life insurance (and I'm no spring chicken) and they request the last 5 years physician's notes - there it would be.... My doc always wants to know how the device is; how the depression is; then on to whatever is ailing me. Being on a schedule 2 drug (Ritalin) in my state, I have to see my doc every month. Not just go pick up the script but he has to see me. And my doc goes through the whole quick check - heart, lungs, nose, ears, ankle swelling, cough cough (which is another surgery waiting to happen) and occasionally the other men's exam. He makes sure my insurance gets their money worth. All good and well, but 5 years will have nearly 100 pages, counting annual blood work and referrals to the specialists. Think I'm going to get the prime insurance rate, even if my blood pressure and cholesterol are ok? Or are they going to re-look at my application to see if I checked that "Have you ever had a device implanted in you to shock your brain?"
On to the next order of the day - really the real reason for posting: Another reporter has found me. In particular she is looking for people who would have paid for the procedure, or have paid for the procedure. I only have 1 acquaintance that I could find and she doesn't fit the rest of the criteria. One of the criteria originally in Broaden was having had ECT. I did not. So here is what the reporter requested:
If you did do a post on your blog to help me, I'd ask that you say I'm a journalist based in New York trying to talk to people who have tried to pay for DBS out of pocket, or people who cannot get DBS because they are too turned off by ECT. Of course I respect all requests for anonymity - I just want to understand the atmosphere DBS has created and I think a lot of people who consider it would benefit from an article about the current state. I've reported on all kinds of complex and sensitive issues, and want to assure I am respectful and professional. ~~ kamalakelkar at gmail.comI will probably talk to her on the phone to try and give her a better insight to REAL depression. Please let me know if you do contact her and how your experience is. (Was it good to talk to her or not - I don't care the details you share with her, I just don't want to be turning people to sharks. No offense Kamala).
Again - I believe there is power in numbers - just knowing other people who have gone through what you have gone through was huge for me. There is a closed facebook page for US. Implanted for Depression. E-mail me if you can't find it. I am shocked at the lack of people in the group. Not that it is that active, but where did the rest of us go?
I can't wait to check the "Google Analytics" to see if ANS still peeks at me. Or are those researchers all unemployed now?