The next step

Thanks to all the well wishers and inquirers as to how I am doing. I've been putting off writing this for awhile because of my "skating on thin ice" feeling. I don't want to affect anyone's hopes/dreams for this technology.

With that said, I have crossed the 6 month mark and am officially on - whether I was before or not. Woo Hoo... All of the physical side of the operation and implantation has gone according to plan. I've used liberal amounts of Mederma anti-scar medicine on my generator scar and frankly - that stuff works. From 10 feet away you'd be hard pressed to notice it. [More cover story anecdotes]

As for the device itself.... with my skinny body, if I raise my arm - it bulges. I have had some interesting experiences with it. An acquaintance of mine is one of those slap you on the back, hand on the shoulder and shake kind of people. Twice he has poked the device. It is still a tad tender if you poke on it. But I'm sure the look on my face was more than he was expecting. The pain wasn't that intense or anything, but my expression definitely changed, trying to gauge whether he was going to notice. I was expecting something like "wow - you got some tight pecs" or something. (He's the body building type). But, neither time caused a reaction with him. Maybe I'm paranoid. (Ok, any of you that have read this blog KNOW I'm paranoid about the device).

In the first 6 months, I achieved no wonderful miraculous change. Now, let's set our expectations back to reality - this daunting depression took YEARS to overtake me. IF I was "ON" during the first 6 months, the only change noticed was a decrease in my sleeping pill needs. And frankly, I had another small change in my life about the same time - so my jury is still out as to whether the GIZMO helped or not. Maybe - maybe not.

The fatigue was unchanged. Amotivational. An afternoon nap was still a necessity. My insurance has denied my Ritalyn - they don't believe in Adult ADD. Another expense for a guy who hasn't worked full time in 3 years!

The mental fog was ~maybe~ slightly better. The mood - well, roller coaster is a fair description. God knows the mental anguish of "why hasn't this thing cured me" washed over me time and time again. E-x-p-e-c-t-a-t-i-o-n-s...... I do think I had that 'lump in the throat' sadness a ~tad~ less, but that has always been situational, rather than chronic.

According to my handlers, they aren't sure when / if it will be revealed to me whether I was on the first 6 months or not. It will be at least a year before they say, if they say at all. Fair enough.

I've developed a small medical problem unrelated to the surgery or experiment, but spent quite a bit of time with my family doc. He is very curious about the whole thing and as I've said before, very much in favor of me trying this. In discussing it, at first he believed I should see an immediate difference - like we've all read and prayed and hoped for. But the more we discussed it, the more he used the word 'titrate' as in "well I suppose they have to titrate it up with voltage and wave forms and such". Um , ok, that makes sense. If the range is say between 0 and 10 volts, you wouldn't start at 10 volts... you'd probably start at 1 and move up. And as I mentioned before, the medtronic version of this gizmo is rumored to have 4,000 different settings. The Parkinson's patients spend hours in their programmer's offices with minor adjustments making huge differences.

The depression 'circuit' that is the subject of all this research has a whole bunch less known about it than the movement circuits of the brain. (Heck, they don't KNOW all that much about any of the circuitry, but that's why I'm wired up!) So, back to my doctor's description, it would make sense to titrate the device. (Mess with all the parameters).

Obviously the original studies had some correlation as to the settings and efficacy - enough to convince the FDA and the internal research boards to add more subjects to the trials. One reader here told us that it took a rather high setting and quite a few months before he/she started feeling a difference.

All that to say, if you haven't already guessed it, my bet (and hope) is that I was off the first 6 months.

The scary part in saying that, is that there is a 2 in 3 chance I was on - and it hasn't worked for me. Scary? Why? Well, that means that I'm back suffering, waiting, hoping & praying for a cure. If not a cure at least a better way to manage it. And frankly, depression sucks.

But - as I have told myself repeatedly and have mentioned to a few others - we will find something. It may take a half dozen of these type studies before the intellectuals begin to understand the depression circuits, but thank God someone is working on it. (In fact 2 major players are working on it here in the US).

For those of you reading this who suffer from treatment resistant depression or know someone who does, there is hope. I'm presuming ANS is close to having all 30 of us implanted - if not finished. The way I understand it, once the safety of the procedure / device is proven, another 200 get implanted. With 200 of us to study, the intellectuals should be able to start drawing even more conclusions and get closer to finding the best way to treat each of our own depressions. Again, I don't know much about the Medtronics study, but if we presume they're banging at this with the same numbers and speed, there will be 400 wired guinea pigs shortly.

Not soon enough - I know. But - there is hope. For all of us with loved ones and especially with children, returning to the fun, productive people we once were WILL BE POSSIBLE. Soon.

I'm hanging in there and HOPING I have been off for the past 6 months. Maybe this WILL work for me. Maybe there is more to the study than on/off - as in titrate this group with these settings and that group with other settings. (Like keep some of us at lower voltage than others to measure the amount of depression being lifted as they increase.... etc). [I don't even know if I'm using the word titrate correctly but it sounds damn good]. It's possible (and makes more sense to me) that we 30 are merely to prove the safety of the device / operation and the next round are the ones that will have 50 kazillon different settings. Dunno. Just postulating. (another big word I like).

If I was just turned on, then hopefully I will start to feel the effects soon. [The programmer wasn't bribable to tell me whether I was on or not, but maybe I can bribe him into cranking it up to 10 - or whatever - to speed the process! Ok, probably not - just a random thought.]

Again, thanks to all my virtual friends who have expressed an interest. One in particular - T - hang in there. It's tough, embarrassing, sad, painful, disappointing and causes a great deal of damage. But I believe there is light at the end of the tunnel. (Hopefully with a long-lasting battery - cuz I don't want to pay to replace the one I have!) We'll definitely have to look into forming a TRD group - we are special - we've outlasted the disease. We are survivors. We can have empathy for those who've suffered a couple of years - even a few years - but until you've walked a decade or two in this black cloud, it's hard to understand and relate to us. (I'm afraid there are more of us than we even know).

[more cover story removed for anonymity]

And one last chuckle - my hair cutting friend has gotten accustomed to the mini-horns, but I was in need of a hair cut and she couldn't fit me in so I went to someone else. He said nothing as he washed my hair, but after he was done cutting, he remarked that I had one of those heads that people liked to study in years past. I asked him what he meant by that, as of course everyone in the place was now listening. He continued that I have the most unusual bumps in the front and a ridge over my ear.... I simply explained that I was from a different planet and those were necessary to convert my superior brain into working with such an inferior human body. I tipped him well and explained the cover story. (I can only imagine what he would have thought if he had followed the ridge down the side of my neck all the way to my chest - the wire leads from the generator to my brain. Now THAT could have been made into a REAL interesting story).

3 months and counting

I made it to my 3 month check up. They had a few more questions for me - but pretty much the same as the other check ups.

I found a dbs group on yahoo - they are a collection of Parkinsons & ET survivors who have had the dbs for movement disorders. There is a wealth of surgical information there if anyone is interested. Of course, the rest of the information like how they get programmed doesn't really apply. DBS group on Yahoo. You do have to be a member to read all the posts.

I've got a few more links to share. One in particular was interesting - Dr. Mayberg interview on audio. Although a bit long, it has a lot of the details about the study and the expectations etc. She talks about fine tuning this to better understand exactly what kind of treatment will work best for a person with depression. There are probably multiple causes for depression and multiple treatments. It sounds like she is trying to find a way to diagnose which type of treatment will work best for an individual patient. Will talk therapy work? How about a certain type of antidepression medicine? If they can get their fMRIs/PET scans and other assessment tools to really fine tune what will work for a particular patient's brain, it would be wonderful. Which chemicals are missing - then take XXX antidepressant. Chemicals ok but neuron firing is slow in this area - then try Cognitive Behavioral Therapy. Tests indicate chemicals ok and neuron firing is too active - then DBS is for you. It's really exciting and fascinating stuff.

Also, it looks like Medtronics has officially entered the race. Here's brainimplant's blog as well as the original press release which is buried in the OCD release as well.

Here's a link with an interview to one of the first to undergo this experiment. Pretty good stuff!

Since I'm sharing only the physical attributes of my experience so far, about the only thing I don't think I've mentioned is the lumps on my head where the holes are. For the longest time I felt like Hellboy with his horns shaved down. I'm sure 'feeling' it with my hand up there makes it seem worse than it is. Also, the wire from the scalp to the generator tends to be a little 'stiff' in the mornings. I don't know how else to describe it - but a little tender stretching makes it go away. Both of these things are very common to the DBS surgery and really have nothing unique to DBS for depression, but I thought I'd bring them up.

I'm at the halfway point in the study. Another 3 months and I will for sure be turned on - if I'm not already.

Choices

First, I apologize for messing up my 'format'. I didn't realize a lot of the blog was unreadable because I had messed with the colors of the template. Goofy. Oh well.

I've since been back to the "laboratory" for the routine checkups. Fill out the questionnaires; answer Dr.#2's questions; Say Hi to Dr.#1; Wait while Dr.#2 fills out forms for Dr.Programmer; See Dr.Programmer & listen to my implant being 'interrogated'; Answer more questions; Get my parking ticket stamped...

I am pretty sure whether I am on or not, but I'll not share.

My main reason for posting is because I'm still researching all of this and ran across a very interesting website that others may find interesting, especially Herb's friend. It's a list of all sorts of clinical trials. The Weblink below is for the 1400+ depression studies underway. Wowzer!!!

http://www.clinicaltrials.gov/ct2/results?cond=%22Depression%22

I also found a link: St. Jude Medical, Inc. (NYSE:STJ) announced it has been awarded a patent from the U.S. Patent and Trademark Office for treating depression using neurostimulation therapy in an area of the brain known as Brodmann Area 25. Cool. You have to wonder if in the future someone infringes on the patent, if the effected patients would have to have their generators removed by court order.... ???

And finally, I've been trying to figure out in layman's terms more about the device and the programming of it. I've found a couple of articles about the devices used in Parkinson's. If I understand the article I'm linking to here, each lead has 4 contacts on it. (I have 2 leads - or at least I have 2 holes in my head where the leads were supposedly placed!!). The little generator device is capable of being programmed to generate current on any or all of the leads and use the case as ground. Then there is the voltage, pulse, amplitude etc. (How much voltage, how long its on (amplitude), as well as how frequently it pulses on). 4,000 combinations for the Parkinson's descriptions. And not all programmers are created alike, so the people on the dbs yahoo group are always comparing which programmers in what areas are the best. I'll have to discuss this with my Dr.Programmer. I don't know if he does Parkinson's patients or if he is just for the study.

I haven't checked on e-bay, but by-golly if the little programming devices ever go on the 'black' market, I'll be buying one. (I'm JOKING folks). But it is fun to imagine all the possibilities for 4,000 different combinations. I'm supposing if the leads were in the right places, one could program any emotion..... Want to be in love with everyone? No problem. Woody Allen's Sleeper movie's Orgasmatron, no problem.

What we don't know about what we don't know!

On a final note - I will actually be getting a hair cut next week. Woo Hoo!!!!

Thinking

PsyFi recently added to the comments about her experience and in answering Herb's posting about a person who is suffering, posted a couple of names & numbers. I changed the names and numbers to the link where the main study is.... I did this for a couple of reasons. 1st, there is no guarantee the suffering person is in the area of PsyFi's doctors. 2nd, it's my understanding that the researchers have been getting a lot of calls - one of their comments to me about my blogging. PsyFi and I both know how rigorous their criteria are for acceptance into the program. I had originally posted a link to the study on this page, but took it off after conversations with my researchers.... i.e. they have plenty of people signing up and don't want to get anyone's hopes up or down.

On that note, just a little more detail on what I've been through..... I counted up 9 (yes NINE) different anti-depressant medicines I've been on. Sometimes in conjunction with each other. (One of them "imported" into the USA for me by a pilot friend). I've had 3 different ADD (legal speed) medicines. I've been in 3 different modalities of psychotherapy with 5 different therapists. I've had 3 different psychiatrists. And I went through and stay close to a rigorous self-help program.

I completely understand that anyone suffering from depression wants it GONE. I truly feel for the guy Herb mentioned. But I feel compelled to point out this treatment is e-x-p-e-r-i-m-e-n-t-a-l and may not work. A quick google shows there are other locations that are being considered in the brain for depression relief. My hope is that this technique is tested and refined to the point that a person who has severe intractable depression can be tested under PET or fMRI and the exact location for that unique individual can be targeted. It's almost embarrassing what we don't know about the brain.

I hope I don't come off in the wrong tone. (This isn't a "woe-is-me" or "I'm worse than you, so I get to try this").

A year from now, we'll know a lot more. To Herb's suffering friend and anyone else out there waiting for a cure - be patient. Hang in there. Try something different and vow to not give up. Between ECT, VNS, rTMS, DBS and new medicines coming down the road, you will find something that works. Don't paint yourself into a corner by thinking you've tried everything - you haven't because there are new things coming up daily.

I recently read a great book by Norman Doidge called "The brain that changes itself". You can find him at http://www.normandoidge.com/.

Along those lines, I re-read the article I've linked to on the right side - interview. I found an interesting quote that has had me thinking all weekend. This is from an interview with Dr. Mayberg:

"This brings up a critical point about this new treatment. DBS is not a cure-all, despite how robust the clinical responses appear to be. The DBS starts the process by normalizing a very dysfunctional circuit. For full functional recovery, you also need get adequate rehabilitation, as provided, for instance, by CBT. This is in many ways analogous to ensuring an optimal functional recovery after hip or knee replacement surgery by requiring a course of physical therapy. I think we are going to need to actually study the synergy between DBS and CBT in these patients more formally." http://www.medscape.com/viewarticle/520659

What kind of rehab will my brain need? (If this works, of course). On the one hand, I'd like to believe that when they switch me on, within a few weeks I'll have my life back. It's been over 10 years since I had a great life. Like the analogy above, if you replace a hip, quite a bit of physical therapy is needed before you can run again. I've changed careers twice in the past 10 years - 1 by choice and 1 by necessity. Could I go back to my previous high-profile job immediately? Probably not. It's going to be a process. Just getting out of the house, every day, would be monumental, and I'm sure it's going to have to be taken in steps.

I can be hopeful and optimistic though and dream a little. Dream about what it would be like to wake up in the morning wanting to get out of bed and go to work. Looking forward to the weekend for a little relaxation and time to clean the house and do laundry. Who knows, maybe even want to exercise!!! (Pre-depression I had a body fat index of 10%, which is very fit. Although skinny now, it ain't all muscle!) I look forward to the challenge. (It's been a long time since I've said that!)

PsyFi, you didn't do anything wrong - I'm just paranoid and don't want to muddy the waters of the research or piss-off any researchers. The next time you visit with your Doc, you might ask him about it.

But I'm staying grounded. One day at a time. No expectations. I am a firm believer that if this doesn't work for me, I will try something else.... as many times as I have to.

Randomized

Well, I made it to the 'randomization' session. That's where the programmer connects the generator to his gizmo and then "adjusts" the device. As mentioned previously, since it's a blind study, I don't know if I'm ON or OFF. He was very nice and explained he has to spend the same amount of time on those that are off as those that are on, so we're completely clueless. (Like the techno-jargon? - gizmo & device? - my terms not Mr. PhD's).

As with every session from here on out for the next 6-12 months, I take the depression tests, answer the handler's questions, see the programmer and wait.

On the physical side, the leads haven't bothered me any more and though the generator is still sensitive from time to time, it's not as bothersome as it was. As I said, I'm thin and the surgeon said it will be awhile before the scar tissue builds up enough for it to not be noticeable at all (sensation-wise). It is still very noticeable when my shirt is off.... but - the Maderma scar medicine stuff is working pretty good. The line is really small and I think it may be gone in a couple of months! The itching though.... OMG.... thought I was going to scratch a hole in my shirt! Luckily that's pretty much gone also.

At the last session with #1 doctor, we discussed me not getting my hopes up. Just take things slowly. He doesn't know whether I'm on or not either. Only the programmer knows and I don't think he takes bribes - but I'll ask next time!! LOL.

I don't want to jeapordize anything by revealing too much about my mood. So I'm just being patient.

Congrats PsyFi. I'm putting my expectations on hold for 6 months - just take it 1 day at a time. (and thanks for the encouragement).

I will share that I had a day of paranoia over the anonymousness of the blog etc. I don't want to jeopardize the study and I don't really want any well intentioned acquaintances to say - hmmmm that sounds like this guy I know. So I pulled the tags & labels. [Cover story info was here] - the point of the sentence is: I couldn't stand for one of my children to be taunted that her daddy has 'depression' and had to have wires put in his head.... still too much for me to handle).

A year from now I won't care!!! (Ever the optimist).

Quickie Update

Again, thanks to the well wishers. Psyfi, I'm with you - excited and blessed to be in the study.

Randomization will occur shortly. (That's where I go in and the programmer either pushes On or Off). I'm looking forward to getting started - whether on or off; let's get r done.

On a healing note, the wounds are all coming along well. The generator still moves around a lot and though I suspect it is normal, is currently a little annoying.

After reading a couple of the comments, I began to feel dizzy.... LOL - kidding. Apparently some readers don't understand why I shouldn't post my thoughts about being On or Off. I can't say I completely do either, but this is a gift and if the gift givers asked me to not blog - I wouldn't at all. For now, I'll keep you updated on the physical aspects. Probably boring. But that describes my life right now anyway. Pretty withdrawn and boring.

As I mentioned before, I did turn on an email, so anyone who wants more detail can write.

Have a safe and wonderful New Year. I WANT 2009!!!! Badly!!!!

Monday Blues & Answers to Comments

Yes, staples, not stitches - my bad. Metal staples that tend to grab on to sweater material especially.

No, they won't "turn it on" for a couple of weeks and even then I won't know for sure whether it is on or not.

My fatigue - and mental slowness is back to where it was before the week before surgery. Plus there is anxiety when I think about what I've done - looking in the mirror has always been tough but it is worse now. And I wake up with a headache. I didn't take any of the prescription pain meds last night to see if they were causing a hangover effect headache. But alas, no. Just a dull headache to add to my lethargy. Hopefully that will go away after the staples come out later this week.

I'm combating the normal "sadness" by trying to stay busy on a couple of projects - none of which pay $, so I need to focus on some of that as well.

I can only imagine the attention I would be receiving if people knew the real story. I've received a lot of well-wishing e-mails & calls from people who heard about the cover story. I have to chuckle about how many of them would be recoiling away from me if they knew I signed up for an experimental depression surgery. I know - I'm probably not giving them enough credit - but having depression used against you for work and child custody tends to make you shy away from being an open book. I do look forward to a year from now when I feel like my old self, in being able to let the people who care the most about me know why I feel so much better!!!

Hope everyone has a good holiday.