Posted by Enigma on November 1, 2010, at 17:51:11
I won't name the location, or site, just to be "professional", but I've been in contact with a "site" doing a DBS study for many months now. It has lifted my hopes, compared to the alternative, which I'd rather not mention. Use your imagination.
It appears now that they have quite intentionally been "trickle-feeding" me (holding back) information about how I would get accepted into the study and after months of back and forth communication, getting my hopes up as these being my "only" hope for "survival", literally, I just got an email with a slew of information, not once provided to me initially, nor in any other email sent to me, or anywhere up until the point where they obtained some of my medical records.
Now they tell me that getting accepted into the study does NOT mean that you will be accepted for the surgery!!! I'm a software engineer by trade, though on disability for years, and have a near-genius IQ, but call me an idiot I guess, for I never assumed these were two different things. Not even once did I question it. I assumed just getting accepted for the study was a "catch-all" umbrella, for the whole procedure, which is EXACTLY how it was explained to me..
(BTW, NO LECTURES PLEASE)Since the site is physically located 1/4 to 1/3 way across the country from me, I also found out, just now, again, months into going back and forth with the intake coordinator, that I would have to take a good number of flights there at my expense (the part of it being at my expense I did know about, not the # of flights/trips), before the actual "interview" as it were.
Here's what I was initially told.
1) Fill out a questionaire, very long, and time consuming, and wait, and wait, and wait some more. Finally, a response.. Looks like I passed, that round.
2) Next round, get all my medical records to them. This is where I'm at now. I had to contact no less than 5 medical institutions, and wait, etc, etc.. and I'm still waiting..
Now, after they get them all, (they got 2/5 records so far), they will have to review they - BTW, I'm in daily agony with depression, bedridden most every day, as all drugs at this point have failed, ECT, etc. I've tried everything. Yes, I've even tried that too.. whatever it is that you're thinking of right now. :)3) Then I have to fly there for an interview.
4) After the surgery, I would need to stay there, and there was a place that patients and their family's could stay at for free (now I find out it costs $10 a night - that's peanuts compared to the cost of the flights, cabs, airport shuttles, other transportation costs), for 1 month after the surgery.
Any of these get red flag me and fail me for the study. I knew this months ago.
It's what I just found out the other day, which I was not told which really ripped me up. I believe they intentionally withheld this information so that people wouldn't look at this overwhelming amount of "work" and say, "forget this!!", and pass on the study. So, they trickle fed it to me, and most likely everyone else (who had to travel some distance to get there, I'd imagine), which I feel is an extremely deceptive practice. This is my OPINION, but I believe it is also a fact, as in my emails to the coordinator, I was very clear about needing to know *every* cost, hurdle, and hoop I needed to jump through in order to get this procedure *done*, including if there was a control group, with a sham device as I can't imagine ANYONE going through this procedure (brain surgery no-less) and taking a chance of getting a SHAM device implanted which basically does, well, NOTHING. A Placebo. Imagine going through all the tests, MRI's, surgery, and everything else, all that money thrown into the garbage, hopes raised, etc, just to get a fake device implanted in your body? But I digress...
So, I found out that after I'm accepted, sorry, IF I'm accepted into the study, I still need to fly there several times, about 6? times before the surgery for a battery of tests (which makes sense, but I just wasn't told until now), which I really don't have the money for. Any of these tests could disqualify me from the surgery. I don't "think" they will, but knows exactly what they are looking for in my brain that they could find that they might not think is "just right" and knock me off their list, as if I'm not a "perfect candidate", and the device does not function for me, it brings they success ratio down, and that looks bad for the manufacturer who makes the device, am I right?
So then, the coordinator then let me know that it's not one month, but up to 6 months of staying in the area, away from my kids (and they're the only thing keeping me alive), and since I have no family, or wife (getting divorced), I would be all alone, which is one of the biggest cause of my depression to begin with (loneliness). 6 months? How did you go from 1 month to 6? I still have the original email that stated 1 month. Then, they said I would have to go back for tests, 1 week later, 2 weeks later, then 3, then 1.5 months, and a bunch of times in increasing increments after that for testing, device calibration, and so on. The study would last for 5 years. That I did know about, but was under the impression that they would just send me emails to fill out (I think that's what they told me), about my mood, and I would send them back, so I said I had no problem with that.
Again, NONE of this information was revealed to me early on (minus what I admitted to knowing about), even when I specifically asked for it. That's a lot of flights and a lot of money, and a lot of effort for a severely depressed person (basically suicidal - and no, I'm not going in-patient, I actually feel WORSE there - been there, done that, I was climbing the walls to get out of there). Where am I going to get the energy for all of this?
The coordinator told me this isn't a quick-fix (first time she told me this information as well) and could take very many months to get the settings on the device set correctly, as each patient is different - and I read stories stating quite the opposite, most likely propaganda, making it sound like the effects were almost immediate, at LEAST in the stories THEY reported.
So, I might give up on the study now, after all this new information came to light as I barely have to energy to get up here to my home office to log into my computer, let alone travel 800 times back and forth to some crummy state and undergo this nightmare of tests for a procedure that might do NOTHING for me.
I could also spent $3000 on flights, just to get denied from the surgery all together. That would be more than a little upsetting. Plus, I can't afford it anyway, so I don't see what choice I have... Unless I just stayed there, instead of flying back and forth for all the tests that were only a week apart. Assuming that $10 a night place has a room available...
Not sure how I would pass the time anyway, as I can't even do that now, with a house full a junk to use, my kids being here, etc. I spend most of my time in bed.
poster:Enigma
thread:967959
URL: http://www.dr-bob.org/babble/social/20101029/msgs/967959.html