Tuesday, December 16, 2008

24 Hours to go

Aarrgghhh! This morning was as bad as ever for no energy. I popped a Ritalin and in 45 minutes another. I was still dragging but had an appointment with my counselor. I got out of bed in time to brush the hair (ironic) and put on some fresh clothes. Interesting that I could be extremely tired but am anxious as well.

The counselor and I talked about the anxiety and he focused me on the outcomes. He was careful not to get my hopes too high but to focus on the fact that I was doing something positive about the depression. "Go team". Rah Rah. (Sorry the anxiousness is making me snippy. Here's another brain lock - snippy isn't the word I was looking for. It will do unless I think of it by the end of this post..... the brain fog is so much fun!).

I have been doing things around the house in anticipation of being gone most of this week. Dog to kennel, etc. Mainly waiting - or trying to think up things to do instead of waiting. I loathe wait.

I had a very interesting call after I drafted the first part of this, which I will share because it has to do directly with this blog. Apparently the blog has been noticed by the people doing the study. They aren't upset, per se, but wanted to talk to me about some things about it. In particular, since this is a double blind sham study, they don't want anything to jeopardize the research. My sharing whether it works for me (or not) really doesn't help their research. I accept that and understand.

They are also concerned about getting people's hopes up (or down). If I have a bad outcome - it may dissuade someone who could benefit. If I have a good outcome - it may set someone's expectations too high or they may think they are a candidate for this but they really aren't.

They are also concerned about the anonymity. My using numbers and initials that are only in the study probably wasn't the brightest on my part.

They also pointed out that they are there for me to talk to about the anxiety or questions and concerns I have. I've probably underutilized them as a resource.

All valid points. They aren't censoring me, just expressed their concerns.

So, my first thoughts are to journal only through the surgery portion. In other words, let you know my experience coming through it. A previous blogger on DBS warned about the halo/frame they used really bothering him during surgery. That allowed me to ask about the one I'll use. I think that's useful. It would've been nice to know beforehand that I'd have the option of whether the generator is on the right or left - something that the surgeon cares about but it hadn't been mentioned.

I definitely know that Kara's input on ECT helped me to an informed decision as well as all the writings on VNS (thanks Herb and others). But both of those are accepted treatments (although neither is probably utilized enough).

As for my experiences after that, like if I really start feeling great, or if I feel it isn't working at all, I'll refrain from. After the study is released, I may have more first person commentary, but I can definitely see the point in not biasing anyone at this point. And by the time the study is released - I hope to be so carefree, my kids as well as the world will know!!! (Counselor says to keep thinking positive). And if it doesn't work for me - as I've said before - I'll find something.

The other purpose of their call was to check on me. (I won't guess as to which was more important - LOL - there's my cynicism - AND lo and behold the word I was looking for this morning - cynical). I'm not the first to be really anxious, I'm sure. Nice to hear they will be with me from the time I get to the hospital through recovery. The administrative coordinator I previously mentioned will be there as well. She has one of those voices and demeanor that just puts you at ease. She's there for you 100%, for sure. (Not that the docs aren't - but docs are docs - LOL - just letting everyone know how much I appreciate her).

Well, I think I'll go pack. My Caretaker "told" me to pack some really warm socks. Nothing worse than having cold feet in a hospital bed. He's funny. The GF is more nervous than I am. Hopefully when she and the Caretaker talk tonight, he can alleviate some of her nerves.


Anonymous said...

Most blogs about medical conditions have the same problem... I write about my recovery from manic depression, and since I use medications I write about how they're effecting me. So people who casually surf through believe I'm advocating a meds only approach. So I do my best to make it as clear as possible that:

1. I'm not a doctor, and anyone wanting to get themselves better should talk to at least one;

2. What works for one almost never works exactly the same for another;

3. It's the recovery that's most important.

If you're worried about your identity you can always migrate your blog to another Blogger account, or even over to WordPress (suggestion)... transferring your blog is actually very easy to do.

Personally I think yours is going to be a really interesting story. I've been interested in DBS for a while now, and "watching" the process of your recovery from the operation and from the depression as it happens is going to be fascinating.

As a casual surfer I believe being as open as possible about the depressions, about the DBS and about the recovery would all be important to your recovery. They'd also be vital for other people who want to learn about the process. If you're worried about scaring people off the procedure, or maybe making it too enticing, just put a disclaimer of some sort in your sidebar. We're all adults.

Anonymous said...

No point in blogging, then, is there?

Anonymous said...

Sorry if that sounded harsh. Good luck with the surgery and I hope it helps!

Anonymous said...

The difference here is that 005's blog is recanting what is happening in a double-blind experimental study, not an FDA-approved medication or treatment. The slightest misstep can send this modality into a bureaucratic tailspin, with no deference given to viability for, or benefit to, the patient.

Anonymous said...

How so? He still doesn't know whether it's on or not. The outcome of the experimental study isn't affected irregardless of this blog. The only downside I see is if he reports his results and that somehow biases someone else in the study - like if he said he was getting dizzy and the other participant wasn't feeling dizzy - but now is (placebo by proxy? or nocebo?).

Given the studies on placebo effect and depression, the authors of this study HAVE to taken that into account. (Arif Khan's study showed that within nearly 100 trials, 50% of the time, placebos were as effective as antidepressants).

The biggest problem I see is if he has severe problems and the attention causes the sponsor or the FDA to halt the study. But from my limited knowledge of medical trials, there is a certain amount of potential problems written up in the study and considered acceptable by the review board.

Which leads me to think the only tailspin scenario would be the sponsor pulling out because of unwanted attention.

What am I missing? (I'm no researcher but understand just enough about statistics, hypothesis testing, placebos and the FDA to be really off-mark).

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