Some answers

I missed a couple of comments that I should have replied to, and some legitimate comments were in google's new 'junk comment' box.

Yes, my battery was changed out also right at 2 years, however I believe it was only "on" for 18 months.

From my understanding (and from what is published about Parkinson's devices) I have 2 leads - 1 on the left & 1 on the right.  Each lead has four nodes, millimeters apart.  The controller can apply voltage, frequency/amplitude to each node separately as well as be "positive or negative" (although that brings into question where its grounded - so to speak).  Additionally the device can do timing sequences like on for 12 hours, off 12 hours, etc.  One node on each side has been MRI'd and X-ray'd to be in the layer called Broadman Area 25.  (I presume they put one of the middle nodes into "the layer". The X-ray techs are extremely cocky that they guide the surgeon to land in the "exact" spot.

As for speculation, I do feel that I am doing better than 2 years ago.  But being the analytical type, I have to put that in perspective, maybe in a perspective that only someone who has suffered through years of depression can understand - If on a scale of 1 to 10 where 10 is giddly-happy, when you've lived at 1 and 2 for so many years, moving to a 4 is a TREMENDOUS improvement.  At least until you see some home movies of back 'in the day' and then you realize you are incapable of truly scaling it.

I will also admit I am feeling good enough that I have turned on the search engines and 'tags' so others can find the blog without having to go through someone else's site's links.  Should someone 'identify' me, so be it.  I have to thank my very frank friend in NM who doesn't try to hide it anymore.  It is what it is.

My understanding is that the FDA approved additional implants but still only at the 3 original sites.  I wonder if there are any policies in the FDA that at least one person is on the review board who has had whichever disease they are reviewing.  In other words, for new cancer meds, they should have a cancer victim/survivor.  For depression reviews they should have someone who has lived through it.  I have the credentials to be on such a board, if anyone from the FDA cares to pay my airfare to 'help out'.

From my 'improved' standpoint, I have had to fight old habits and routines to continue to progress.  As an example, my afternoon fatigue used to be overwhelming and no amount of Red Bull or Starbuck's shots could keep me from an afternoon siesta.  However, by using energy drinks and pushing myself, the fatigue is not as bad.  By pushing myself, I don't mean pure "willpower".  If any of us could "will" the symptoms away, we would.  But by using an energy drink and trying to stay upright an additional 10 minutes, then 15, then 20, I have made progress.  Now any good shrink would tell us that one of the techniques to fighting depression is to push yourself to do the opposite behavior that your symptoms are telling you to do.  "Feel like isolating? - time to head to the mall or call a friend.  Have no energy? - take a 10 minute walk, then 15 etc."

Great advice - but it don't work that way for some of us.  Been there, tried that and felt totally humiliated and like a failure because I COULDN'T.  Next week at the shrink - "So, how did it work for you?" Um, the darkness got darker because no matter what I tried, it didn't make anything any better and that in itself made me feel worse.  What other completely brilliant ideas do you have?


My truth is that I do feel measurably better than 2 years ago. [Happy now that I've admitted it?]  But again the caveat emptor, put on a court's stand and under oath asked if the device was what was causing the change, I couldn't say "yes without a doubt".  The meds have a LOT to do with my feeling better.  They say (they being the handlers) that one of the theories about the device is that it amps up the effectiveness of the mood altering pharmacological plethora I take.  I am at the FDA limit on 2 of my meds.  As far as I know, I'm at the FDA limit of voltage being pulsed into my head - at least by all measures I've heard of battery life.  I also stay tuned into a number of self-help programs, where I have seen nearly miraculous changes in people's lives.  So there are a lot of possibilities including the disease is just not as bad right now as it was 2 years ago. I don't know for sure.


I am adamant that the current research should be allowed to expand.  My Canadian buddy (one of the 1st controlled batch of 20) is well on their way to regaining their life completely.  They too have had to try the old suggested remedies and be diligent about their meds, but their life is better also.


An amazing statistic, is that in almost all of the major anti-depression medicine's trials, right at 2/3rds had improvement.  From what I've heard, the same is true for this treatment.  I have my SSRI which should cover 2/3rds, my SSNI should cover another 2/3rds, and with my gizmo, yet another 2/3rds should show improvement.  (For anyone doing the math, that's 6/3rds - or 2x overkill). And that doesn't even account for my Ritalin, which should make all of the remedies at least feel like they're working faster (LOL). [One of the FUNNIEST comedy bits ever is Katt Williams talking about his kid on Ritalin.  Catch it on Youtube - but keep the volume low if you've never heard him before or don't like the F-bombs].  For me Ritalin is speed - I was never ADHD.  Just ADD.  And whatever GENIUS at the FDA or insurance companies decided that adults can't have ADD is an F'n fool. (In honor of Katt's language).

As for the commenter encouraging me to divulge more,  I have.  But I'm still not going into extreme details or singing the virtues of DBS for at least 4 reasons.  1 - Anyone else in the program might be swayed by any side effects both good effects or bad effects that I report. (and I have had both).  2 - Anyone else in the program might feel "how come it worked for him but not for me?" causing a spiraling DOWN effect that I know too well.  3 - For others who are not in the program but desperately want to be, I don't want to give any false hope, nor take away hope (For many of us, hope is the only thing that keeps us alive). To them, I want this blog to fan the embers of their hope back into a flame.  Progress is being made - even if this isn't the device for them, there are now 3 other trials world-wide, targeting other parts of the brain.  4 - I am not ready to fully come out of the closet and too many details risks my own protected little world.  Besides medical personnel and other implantees, only 7 people know about it.


To the last commenter - who had their battery changed.  We're on a similar timeline, but from the IP address trail, we're from different hospitals.  Feel free to email me if you want to share details.  (Oops, the handlers may object to that). [Yes in a former life, I was a techie too]  The site still gets the most hits from the area in Canada - where the first trials took place.  Interesting. Eh? (couldn't resist the linguistic jab).


I'm still hopeful a Medtronics implantee will make contact and let me know how their project is going.  (It's ok if you have a Kia implant and I have a Cadillac!! We're both on the same road. TEASING).

Just Links

I admit I have been more busy than usual this year. Read into that whatever you like..... (one commenter on the last post said I was inferring that I was doing better).

I got no comments as to whether I should open the blog to google & yahoo for them to see the tags and direct people here. I've thought about setting up the $ google offers for being able to advertise as well - and donating it to depression charities. So I'm open to YOUR thoughts on those ideas.

I've collected a number of links of interest. The first has to do with a follow-up to the original Canadian trial of 20. I knew of 1 suicide, but apparently there were 2. Additionally 1 passed of natural causes. My condolences to the families and as odd as it may sound, my thanks. In fact my thanks goes to all 20 (and the original 6) who risked a LOT in order to promote the science. I can say though, from my standpoint of being one of the original 30 in the USA, the decision wasn't based on promoting the science as much as giving me some relief. A side note of opinion, I believe, even in my study, more should be done to avail LPCs or other therapists to the people in the study. The article is a little critical of the study but since we're talking BRAIN SURGERY, one should be very careful. The article: http://psychcentral.com/blog/archives/2011/02/08/deep-brain-stimulation-dbs-for-depression-long-term-followup/

Another interesting point the author makes is that it is impossible to do a full "sham" study. You can't take a person and 'pretend' to do brain surgery like you can give a control group a placebo pill while testing antidepressants. My study did 'sham' the first 6 months, which from my standpoint should meet criteria. I'd love to see the update on my study, but alas, that might bias me - and we wouldn't want that. (tongue in cheek comment since I don't want to bias anyone considering the surgery but apparently my writing can be interpreted as it helping). I will say I haven't had any of the really bad side effects others have reported. 1 person I keep in contact with has regained a great portion of her life. 1 has suffered bad side effects but is currently stable. 1 has had some improvement but also slid back.

The next interesting link continues the ethical discussion, specifically believing the OCD DBS should not have been given approval by the FDA. http://www.nytimes.com/2011/02/15/health/15brain.html?src=twrhp. Interesting - but again, the person suffering from the severe OCD probably has a different view of the issue.

Finally the last link of interest talks about the 3 areas of the brain that are being researched and how they now believe the 3 are 'cabled' together so the results of affecting any one of the the 3 will be the same. Um, ok. Obviously more and more research is being done. I believe it is a German study that is wiring up 4 leads into subjects brains in order to maximize their ability to find the right spot(s) or combination. Batteries in my device last from 15 months to 2 years depending on the person's settings. I can only imagine the 'power' required to turn on 4 different nodes. (Mine has 2 on and lasted 18 months). Here's the link: http://www.mtbeurope.info/news/2011/1102034.htm.

Again, shoot me an email or a comment on your thoughts on allowing the search engines to see the blog or not.

If you're in another study, I'd love to hear from you and your experiences, if you are able to talk about it.

Thanks for your support.

Possibilities

The most sought after and needed word to many a soul is the word HOPE. As long as there is a small ember of hope left inside, we can carry on. I started this blog out of HOPE - hope for a lifting of the darkness of depression. I've tried very hard not to reveal too much since I am in a study for DBS and I don't want someone making decisions based on my experience.

I will go out on a limb though and say there is HOPE.

It's been quite a roller coaster of an experience. Very surreal at times. I've communicated with people who nearly have their lives back and people who were unaffected by the procedure. The trials continue and hopefully there will be some new papers out soon.

The next word after hope is restored is the word POSSIBILITIES. If we let our imaginations wander past hope, what are the possibilities in one's life if the depression lifts or even lessens? How quickly can a person rebuild their life after a decade of darkness? I've touched on this before when asking what rehab for decade long depression would look like. If I had a hip replaced, there is a standard set of exercises and physical rehab conditioning that takes place.

In this world of the "new frontier", there doesn't seem to be a rehab protocol. Since the data isn't in yet, what are the odds that a person gets to feeling better, starts to rebuild their life, and the depression returns? The person with the replaced hip is usually told at the onset what the history is for a person who is their age in their circumstances. So, since there is no data, one reverts to hope again but adds 'what if?' What if it works? What are the possibilities?

Depression is an octopus with many tentacles (symptomology). The mood may lift but the fatigue continue. The cognitive impairment & memory fog may lift but not the amotivation. One of the worst things about this disease is self-doubt. I don't know if self-doubt is truly a part of depression or if it is learned from the other disabling factors. But here's the deal, those wonderful dreams of possibilities get interrupted by self-doubt. Anyone recovering from this disease or about any other long-term disabling disease wants their old life back. Or at least a good portion of it. What can be recovered?

Another disappointing fact is still the stigma of the disease. Let's say a person does start feeling better and wants to work again. What do you tell your prospective new employers? "That gap in my resume is when I was depressed but now I have this gizmo in my chest that electrifies my brain and I'm doing much better"?

Possibilities. Shadowed by self-doubt. "Tis better to have loved and lost than never have loved at all"? Tis better to be feeling better and full of worry than to never have felt better....

We'll see.

Joe Pantoliano of movie fame (Sopranos, Matrix) has suffered from depression and has put together some great Public Service Announcements (PSA) as well as having started an organization to bring more education about the disease and to 'end the stigma'. Here's the link to the organization: http://www.nkm2.org/. Take a look at the PSAs. It might be a good starting point for those of us who have friends / loved ones who don't believe in mental illnesses. I'll be buying the DVD in the near future.

I genuinely 'hope' everyone has a wonderful 2011 and that it becomes the year of possibilities, not just hope.

PS - I have elected to remove certain phrases and comments from previous posts that could ID me. I hope it doesn't distract from the content. I've thought about putting the label/tags back in and turning Google's advertising on (hey I could use the money). But I also have promised my handlers that I'll be careful about what I reveal. I don't want someone agreeing to the surgery because my hope meter is a little higher. I do hope anyone whose hope meter is very low, can re-energize their hope that there are new treatments coming down the road that may help them. Anybody have any thoughts on it?

Heading into uncharted waters

First let me thank Rich for his comments on my last Blog. It's great that he has found some relief and has started rebuilding his life. Its fantastic that his docs are willing to try something a little different. One of my Canadian friends was that lucky years ago and is doing well. (She recently had her battery changed and things seem to be going just fine).

I'm not much different than the last time I wrote, so there isn't much of a personal update. My handlers are politely going through the protocols of adjusting meds and then waiting the 4-6 weeks for me to report back.

Depression & anxiety have some common real estate in my brain, I believe, so the Docs are trying to find the balance and get it addressed. I appreciate their efforts.

I am going to have to have a non-related surgery in the not too distant future. For anonymity I'll leave out any descriptions. I am traveling a number of hours in order to work with docs that aren't in my home town, both because of my own paranoid fear of everyone in my town finding out about my gizmo, and also because my insurance will actually pay more of it. I completely understand HIPAA rules that say no one in the office can talk about my conditions and even then it is supposed to be on a "need to know basis", but frankly, my town is so small that I doubt there is anyone who is more than 2 degrees of separation. (I know someone they know).

As for the insurance, OMG I could rant a long time about it. My fear here is that since I couldn't have an MRI done, my surgeon wants another test done and it will be my luck someone at the insurance company will say "why didn't you do an MRI?" and the answer will be "because he has a neurostimulator implant" and the insurance company will say - "we don't have that on our records - so we're dropping him". Ya, I'm paranoid about a lot of things.

I have another physical problem that has inoperable pain. I figured since I was going to meet my deductible I might as well have it explored again as well. That doc believes a certain drug, taken for 6 months, stands a real good chance of relieving the pain. But its a 6 month trial and if it works, you pretty much have to stay on it. (It coats the lining of your bladder if you must know). The only problem: $172/mo. Luckily the pain is transient and comes and goes as it pleases.

Maybe, if the gizmo and meds really start working well, I can get a job with better paying insurance. A good paying job would be a good start anyway.

Besides congratulating Rich and acknowledging that many of the "firsts" are having batteries changed, the point of my writing was this link about "Patterned Pulses". This whole DBS frontier is HUGE. Frequencies, milli-amps, volts, pulses.... Its going to take awhile to map out what modern science can and can't do inside our heads.

Which brings me to a thought I had while debating whether to have the surgery. The surgery itself will knock me down for at least a week, probably 2. Then rehab, etc. It was overnight to get wires put in my brain. When the Docs offered me the Broaden Study, I immediately had my answer, even if I did take some time to 'think about it'. That was a no-brainer (pun intended). The depression had ruined my life and trying something different than meds, was no big deal. I've thought 100x more about the current need for surgery. I can live with the pain for awhile longer - maybe. Just an interesting thought for anyone who is hoping to get in line for this gizmo. Give it more thought.

The first stage of the study was really focused on Safety, not efficacy (whether it works). Obviously if they are beginning to move ahead, they've established the safety and there had to be enough 'successes' to warrant moving ahead.

I'd still like to hear something from some Medtronics candidates. Does it seem to be working? (Or did Medtronics put a gag order on them?)

What is Success?

During the course of this study, we are given all sorts of self-report assessments, from simple depression inventories to quality of life measurements. But what defines this treatment as a success?

In basic experiment terms, you compare the results of the treatment on an experimental group and if it meets the criteria statistically, then the treatment is, or is not, a success.

So let's say a person had a quality of life 15 years ago that was at an 8 or 9 on a 10 point scale - great life. Then depression hits: fatigue, cognitive fog, isolation, relationship failure, job failure, the whole gamut of long-term, treatment resistant depression takes hold and the quality of life reaches a 2 on a regular basis. (For many of us, a 2 is a good day. I'm not sure where suicidal thoughts creep in, but I'm going to say around 3, for the sake of argument. Not full ideation - or the actual development of a plan - just some of the thoughts creeping in).

So, a great life is 8 & 9; a sucky life is below 3. What should be the 'goal' of success for an anti-depressant treatment?

For some, just the boost out of the suicidal thought area is a great success - maybe a 4. The person may still have some major dysfunctional area, like being not able to hold a job, but at least they don't ruminate only about the disease. At a 5-6 they are more like people with situational depression - having some good days, some bad. I think 'normal' would be a 6-7 on my scale. A person who enjoys most areas of their life.

So what is success? Is a 5 enough?

I ask because I have had an increase in my scale. (Gizmo or meds or life changes - whatever the cause). I am better. But I am still bitter. I want my 8s back.

I recently had a heart-felt conversation with one of my children about the toll depression has taken on me and because of that, how it has affected them. The good news is he doesn't believe I'm a bad dad. In fact he believes I'm a good dad. That affirmation meant the world to me, but with the negative self-talk still creeping in, it also pointed out the bad news which is - imagine what kind of father he would have had without the disease. As he pointed out, he has never known me any different.

I have mentioned there being other blogs by other 'subjects' for these experiments. One has had major problems but recently found a little relief. Another continues her struggle with no relief. As for some others that don't blog but do occasionally communicate with me, the person I know who has had it the longest is achieving great things. Things she didn't think possible even 1 year after her implant. Another says he believes he is doing better and has switched medications to see if it improves even more. (I haven't heard from him lately - hint hint). The woman who is doing wonderfully has cautioned me that just like having a knee replaced, it takes time and effort and to be really cautious of over-doing. She isn't back to her 8s but she is enjoying her life again.

So as an update, I will say I am in a better place than pre-treatment. Do I believe gizmo is totally responsible? Not sure yet. Do I count myself as a success? Unfortunately, I want my full life back. It's somewhat relative I'm sure. Pre-operation, I might have been satisfied to be a success with my current quality of life as compared to then. But isn't it human nature to want more?

From my limited understanding, the initial study itself has proven to meet the criteria of success to move ahead. More hospitals may be getting ready to add more subjects to the statistics pool. I think that's a good thing.

I'll admit another thing, while I'm at it. Updating the blog is a downer for me. It's reality. Although looking back and seeing my progress should give me a feel good, bringing up the page and reminding myself that this is me. This is my life. And it ain't where I wish it were. That brings me down again. So, I avoid updating more often.

For anyone getting into these experiments - keep your expectations low. I monitor my general mood, anxiety, irritation and fatigue as different columns. i.e. My mood has improved but fatigue is the same. I remain hopeful. Hope is necessary! The medical field is making progress in understanding this disease and I am hopeful that even if this isn't the cure-all for me, it won't be long before something comes along that does the trick.

Is it wrong for me to want my 8s back? Are my own expectations unrealistic? I guess I am an optimist and believe it is possible.

Still on the Roller Coaster

Interesting that a fellow depression pal entitled her blog with the Roller Coaster title as well.

I previously committed to not revealing too much about the effects in order to preserve any research boundaries. My last couple of posts had mixed messages in them so I thought I'd explain a tad more but still not go overboard on details.

I did experience some unusual emotions for me. However, I have been under extreme financial stress and the Holidays have almost always sucked. Was it gizmo or circumstance? I can't say. But I will say it wasn't something that surprised the handlers nor something that made me think about turning gizmo off. It was bearable. Uncomfortable for a time, but definitely not a show stopper. My results may or may not be typical. If someone were considering the procedure, I wouldn't let my dip influence my decision.

And yes, I had a period of time where I could feel a difference (in the positive). I even went so far as to attempt to reduce my medication. I did feel good enough to consider not making my appointment. For anyone who suffers depression and starts feeling better, no matter how much you detest taking meds - DON'T MESS WITH THEM. At least not on the most GRADUAL of scale with your handlers leading the way. LESSON LEARNED.

So a couple of caveats so far: Listen carefully to the handlers; use their resources as much as possible; expect some ups and downs (whether its working or not); don't mess with meds if you are feeling better!!!

I know different meds and different therapies work for different folks. (Because frankly I believe there are different types of depression and we aren't smart enough yet to know the difference). I went through a set of seminars and I mentioned it a few blogs back. [I've removed some references that could ID me]. There are similar ones across the nation and if someone is interested they can email me with their location and I'll try to locate one. They are NOT for everyone. This too isn't a cure all. I'm just saying I felt much better after doing them.

I have plans this weekend but just found out that Dr. Mayberg will be speaking a few hours away from where I live. There is a big part of me that wants to cancel my plans and go listen and possibly even meet her. I don't know if that would be ethical or not for her to talk with a subject. I don't know if I would have the opportunity to speak with her. And frankly, I'm not sure what I'd say. Oh well. If she happens to read this in time & wants to meet - I'd be more than happy to rearrange my schedule. LOL. Who knows. Maybe I could get a job helping her.

So... with any luck, my meds will get me back to that better place in a couple more weeks. As far as I know and as well as my Canadian connection has pointed out, there isn't anyone who has had good enough results to completely come off meds. I know a number of the original Canadians check this out on occasion and I'm sure many in the Brodman Study do too. Again, I've not heard anything from and Medtronics subjects, but I'd be extremely interested in any that were able to get off meds. Feel free to email me if you don't want to leave an anonymous post.

Speaking of comments - someone left an updated link to the Mayberg interview that seems to work better: http://videocast.nih.gov/Summary.asp?File=15724

MM - hang in there - call when you need.
Sadano - BLESS YOU
Fellow DBS followers - I think about you often. Hope things are improving.

I've added 3 new posts to the list on the right - recent articles in the news. One is a research paper which reviews the currently published findings on DBS for depression and OCD. I linked the actual pdf. The second is the 1st article I've read about Medtronic's actual trial. The 3rd, with the Warning, is about German research. Every time I pull it up my browser locks up. Might be me.

One last comment - I am TRULY blessed to have a partner who continues to put up with me. Thanks my love! (Herb, and another other caretaker/supporters, God bless you).

Roller Coaster

My last post was less than positive. The study itself shifts gears at the one year mark and it seems like either you get it - or you don't. The length of time between seeing the doctors enlongates and there isn't a lot of discussion of options.

Frankly, I was pissed.

I have plenty of feedback for the 'handlers' and we'll see if they are interested in my comments.

Along the same circuitry of depression exists anxiety and anger. Given that OCD is considered an anxiety disorder and the DBS experiments on OCD seem to plug into the same circuits makes a lot of sense. As for the anger / irritability - one has to wonder how close in the limbic system fight or flight is connected to the same areas. In my mind, I picure anger, anxiety & depression all exisiting on the same circuit board. Suffice to say, in my own experience, I've become friends with anxiety and anger.

My update consists of some more links and a VERY informative video by Dr. Mayberg. I had to download the "REAL" plug in to watch it, but its worth it.

http://www.news-medical.net/news/20100127/Testing-DBS-for-treating-severe-long-term-depression.aspx

http://www.biomedcentral.com/content/pdf/1756-0500-3-60.pdf (more of a paper review)

http://www.sciencedaily.com/releases/2010/01/100126084057.htm

http://www.elementsbehavioralhealth.com/depression/deep-brain-stimulation-successfully-treats-severe-depression/

and the most important one:
http://videocast.nih.gov/launch.asp?15608

I'll see if BLOG allows .rm files as videos: It tried but after 30 minutes of uploading wasn't done. Please take the time to go to the nih site and view the video.

I am doing quite well, after the aftershocks of the 1 year transistion. I am more positive about the whole DBS idea now than 3 months ago. I still contend the handling of the patients is not where it should be, but the medical science is advancing in the direction it should.

I am still aware of some 'bad' experiences occurring with others and extend my best wishes to those people and hope something can be done. I also find it fascinating that I've not heard from any Medtronic participants. The Europeans have a study where they're implanting 4 leads - and taking the time to test each and every node on each and every lead. (I would think that would be a pretty smart thing to do even if you fully believe node 2 is exactly placed where you want it).

I go for a checkup soon. I thought about skipping it - and I'll tell you why afterwards.

Expectations are disappointments waiting to happen

Experimental - Efficacy - Safety - Titration - Patience - Transient

I have just returned from my 11 months checkup. Although 11 months, probably I was off the first 6 months, so this is month 5.

When I agreed to this, my thinking was very simple: I'll try ANYTHING to get rid of this.

Over the past few months, I have seen some mild (positive) changes. Can I say for sure its the DBS? Absolutely not. Maybe. I'd go so far as to say probably the changes are due to the DBS. But this blog is dealing with reality. My reality.

I made a decision months ago to only report physical problems and to generalize any ups and downs because this is an experiment. My reactions may or may not be the same for anyone else. But (again another but) I feel real compelled to go off on a tangent of expectations and reality and just how new this field is.

Below is a link to a video of Dr. Mayberg discussing the first woman implanted and her reactions, which were remarkable and extraordinary - IN THE OPERATING ROOM. I apologize I wasn't able to embed it, please take the time to listen.

http://www.dailymotion.com/video/x9vgvq_treating-depression-deep-brain-stim_tech

Dr. Mayberg talks about the IMMEDIATE change in this woman.

Next is a video of Dr. Resai and a woman who underwent the surgery. Note the part where after implantation, they bring her in to modify the parameters on her device to zero in on lifting her depression. This is similar to Parkinson's implants where they may spend hours adjusting the generator and choosing which contacts on the leads to use (there are 4 on each wire - 1 wire on each side of the brain). Fascinating and it really really looks like this could be a cure that doesn't take much time.

But back to reality which has to do with bringing this product to FDA approval and that means following rigorous scientific & ethical guidelines. What the researchers actually know about how this is working is baffling little, I'm afraid. For standard FDA research and approval of anti-depressant drugs, there is a 12 week period. The experimental group is given the new drug for 12 weeks and their progress monitored and measured. At the end of the 12 weeks, the results are compared to the control group which was receiving a placebo. Using statistics, the differences are compared and it is decided whether the new drug made a 'significant' change over the control group. There are hundreds of Internet links about various studies and how strong the placebo effect is (18-22%). And how ineffective many of the anti-depressant drugs are. To generalize most studies, 1/3 get remission, 1/3 have some good progress and 1/3 don't get any help over 12 weeks. Then the process may start over at a different dosage - another 12 weeks.

One of the problems with VNS was the ability to figure out what the proper 'dosage' of current to the vegus nerve is for each person. I'm no expert on it, but I know it was controversial - I am sure Herb has plenty of articles and literature on it.

So why am I bringing all this up? As much as my team emphasized "don't get your expectations up", "this is brand new totally completely untested and may not work" it was damn hard not to get them up. And every month when I go for my 'adjustment/checkup' and run through the same questions, it reminds me how bad I have gotten over the years AND maybe this next adjustment will do the trick and next month I'll be CURED. My expectations.

Denise commented in a previous blog:

"From what I've read there seem to be about five sites which could be targeted
to alleviate depression. Therefore, if you were to participate in a DBS trial
and you don't find it of any benefit, what do you do next, opt to attend another
trial where they are targeting another site??? You could go on forever like
that.

Dr Helen Mayberg mentioned that a number of patients noticed acute affects
in the operating room, wouldn't it make sense, whilst they are doing the
operation for them to try stimulating more than one site to see if the patient
reacts better depending on the site that is being stimulated. Or is it not that
simple?

Also, Dr Helen Mayberg says that the patients in her study who failed to
respond to treatment showed no subgenial cingulate changes. I'm not sure which
area of the brain they have stimulated in your case but if it is the "Brodmann
area 25" have they noticed any changes in the Subgenial Cingulate area of your
brain?"

All good questions Denise, and I hope to find out the answers - but for now, we're following the 'protocol' of the experiment. This phase is more about safety of the device than the efficacy. I would LOVE for them to play with the settings for a few hours and fine tune the response, but that's not the protocol. (My apologies to the experimenters if this sort of stuff was supposed to be under wraps - I think the followers need to understand this is SLOW going for a reason. I don't like it - at all - but I understand it and I want to make sure anyone dreaming of having this done understands there is a LOT of work to do before it comes to market and gets approved).

Let me be very very clear - the informed consent was clear and I understood what they were saying - but my own desire kept thinking about the internet stories of miraculous change. One reader here, PsyFi, shared a little of her experience and it was nothing short of miraculous. Another reader and follower shared that though it took quite awhile to find the settings that seemed to help him, it was worth it.

So what am I going on and on about? With any luck, the FDA will approve the next steps for St. Jude's study which to my understanding will include up to 200 more implants. I'm all for it. However, for all of you hoping to get into it, or hoping the medtronics study is for you, or are just plain suffering and expecting this to come and rock your world when it is generally available - be prepared to find out there is more to the story than what the Internet videos/articles discuss. That adjustment phase is done 'by the book' on a rigid adjustment schedule. So even if this is going to work completely for me, getting it 'titrated' is taking a lot of time.

I can completely understand the necessity for a slow pace on such a NEW technology. I just didn't manage my expectations well. As it turns out, from what I've recently been told, a lot of the operating room experiences were transient. i.e. the patient still had to undergo a lot of trials and errors on getting it adjusted for them.

By what I've found on the Internet, including a new German study, there are still fewer than 60 of us. (Medtronic rep, feel free to give us a head count if you can - yes head count is a pun). The gizmo has 4 contacts on each wire - 1 wire on each side. Each contact can be negative or positive with different voltage & milliamps & frequency. Thousands of combinations. I don't know how long it took the pioneers of Parkinson DBS to hone in on their protocols, but it is going to take at least that long for us. And although the video above (where the woman is being adjusted) looks like it may be a simple procedure, remember we are dealing with emotions - not physical movements. A Parkinson patient can visibly see and feel whether their tremors are gone and the setting is working. For moods, it may take quite a bit more fine tuning.

Of course, being the optimist and willing to do my part to promote the science, I offered to take the programming gizmo home with me and adjust as necessary. Fat chance. And understandably it will never get to that. Just because someone has a bad day at work, we can't just go home and up our gizmo. But alas, I had to try.

I've added a link about DBS and rats. Interesting about serotonin being more effected than norepinephine (noradrenaline). I am not on any drugs that affect serotonin - I'm on drugs that affect norepinephine. Possibly I will see more rapid change when I'm able to switch drugs. (Supposedly after awhile, the study allows more testing of combinations etc). BUT - I'm not going to get my expectations up.... ya right.

Overall, putting my expectations rant to the side, I have had some interesting effects. Again, I wouldn't swear they're from the DBS, but probably are. Some of my 'blah' emotions seem to be shifting. I don't want too get detailed, but I am having 'some' different reactions emotionally than I was. I have been able to maintain 20-25 hours working however I did have some bad days and dropped about 5 hours at the last minute - just couldn't do it.

Psyfi, others, or the original Canadians care to comment? Or you can contact me if you want to be anonymous. Note the comments on the last post. A U.K. DBS patient has put together a group for "us". (I hate google groups, FYI, Yahoo would have been my choice). I think allowing us Guinea pigs to share may not be a good idea - but I will say - knowing there are others out there who have gone through this makes me feel wonderful. Maybe the sponsors should consider their own controlled groups - hint hint to the IP address in Plano). There is also another USA DBS person who has put up his own site. That should be interesting as well.

I hope everyone has a good turkey day and thanks for letting me vent.

10 Months

I recently returned from my 10 months checkup. As you can imagine, every visit has a battery of self-reports and depression instruments. On a regular interval there are extra "instruments" to measure cognitive ability and memory and such. #2 doc has the pleasure of going through one of the instruments that then turns into some magic number(s) that then goes to the programmer so that he supposedly knows what to adjust next. (This is my layman understanding).

TITRATION.

I've tried bribing them to just crank it up. I've tried charming them into cranking it up. I've tried begging them to crank it up. But they have their jobs to do and although I'm sure they're supposed to keep as neutral position as possible, it's hard not to like them, if nothing else because they are trying to help.

IF I was off during the first 6 months, then this would be 3 months of being on.

Being somewhat scientific minded, I hope at some point to know more of the details.

I wish I had kept count - but I'm sure there are a couple of the depression instruments that I have done nearly 20 times. And I can almost run down the page with my answers. This time though, I think I answered a couple of them differently.

Yup - I think there MAY be some difference.

The fatigue is unabated. My use of my "Central Nervous System Stimulant" (Ritalin) hasn't decreased in total, although I have had a couple of days where I used it less, I have also had a few days where I needed more.

My sleep pattern is rocky as ever. Most nights is a 1 to 2 hour ordeal falling asleep. My use of sleeping pills is unchanged. Again, I have had a few exceptions. Early on I reported it had changed some for the better - but it returned to its sucky ways.

The self-talk cycle that accompanies the depressive symptoms seems to be a TAD better. I don't know if that is the electricity zapping those bad thoughts away, or if I'm practicing more cognitive behavioral therapy and reducing those thoughts on purpose. (I have been making a concerted effort to challenge those more often).

The mental fog is hard to measure right now. The good news is that I have been working - up to 20 hours a week. The bad news is that my motivation is not internal - but external - the bill collectors. So, in order to "function", I have been heavily relying on my Ritalin. The Ritalin does a magnificent job of reducing mental fog, allowing me to concentrate, make decisions and remember things more easily. I've still caught myself with a few train of thought derailments, but again, I am functioning. (The paperwork associated with the new job is excruciating and I can fully understand how people get hooked on speed. Remember, Dr. Freud at one time was a big believer in cocaine - self prescribed in fact). I do keep that in mind and on weekends and whenever possible - don't take the Ritalin.

The difference that may be occurring is in the level or deepness of the depression "feeling". That pervasive sadness that rarely lifts. Now I admit I have a great mask for when I am in public - or even with my kids, so someone with a camera may not notice the difference. It's hard to describe exactly but the depth of the sadness doesn't seem AS deep as often. If I were graphing the level of sadness/grief/blues and I believe I was at a constant 6 with spikes to 10, I think recently I have been more at a 5. I still have spikes to 10, but I think the duration of those spikes may be a tad less as well.

But lets be fair about this. I am susceptible to situational depression on top of my melancholia. At the end of July and in the middle of August, I suffered through two "friends of friends" committing suicide. (Sad to say but it was a good reminder to me to keep those deep spikes in check). My own spikes have gone to 10 watching my friends (and family) suffer through those events. Because of those and my own guilt I decided it was time to come clean with my children. One cried. I think one knew (long story) and the rest took it in stride. I came clean with all the little family secrets as well. Ends up they asked more about the other family secrets than they did the operation.

The skeptic in me worries my current mood uplift is a rebound affect. Down with the suicides - up with the honesty.

Additionally, as I mentioned, I have been trying to self-cognitive-behavior control the self-talk. AND.... [for anonymity I've erased a couple of stories about another medical problem I have and how I've dealt with it]

Now you have to ask yourself about the irony of a man who would seek out an EXPERIMENTAL alternative treatment to depression but would scoff at a 4000 year old alternative treatment for pain. OK - I am intelligent - not smart. Got it.

Anyway, throwing into the mix: the situational depression rebound, the purposeful self-talk, & of course - TITRATION of my DBS.

To prove treatments work (using the experimental model) there is a statistical level of change and a level of confidence in that change that all has to be 'proven'. I am not ready to say anything has proven successful. I can say last month's mood was better than 6 months ago and way better than a year ago when I was considering ECT.

Do I sound skeptical? Unfortunately. Paxil helped for awhile. Wellbutrin helped for longer. Life is full of situations which lead to depression. But - I had a little improvement last month - bottom line. Additionally, my angel, my girlfriend, told me the other night that she thinks I am doing more and feeling better. (She probably is a better barometer than either me or the docs).

I've added 3 links to the side. 2 are recent about the original study participants still doing well. The third is about the type of depression 'they' believe will be helped most by DBS. I think that is my kind.

No Ritalin today and I made it through typing this up with only 1 derailment and it came back to me pretty quickly. Who knows.... something MAY actually be helping.

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.

A couple of thoughts

As I mentioned, I am very close to one friend who I consider to be like a brother, but elected not to share my direct experience with him at the time. Here's an interesting side-note.

My friend heard about the cover story and called me. A friend of a friend had called him, etc. No biggie but he was concerned. I reassured him that I was fine and was never in any danger. When I described that they had drilled a couple of holes in my head, I expected him to make jokes about needing more holes in my head. Instead, he commented that I should have had them insert some wires and done that 'deep brain stimulation' thing. Hmmm.... we are connected too well.

[More cover story detail was removed from here]. I will let him in on the 'rest of the story' next week.

Here's another side thought for anyone undergoing this type of surgery - plan on wearing button down shirts, not pull-overs. LOL Every time I pull on a t-shirt it tugs at the stitches.

Catching Up

The day of surgery I woke about 4:30. Sleep was very restless from then on until 6:30 when I gave up and got up and showered. Anxious again.

The wait in the pre-op waiting room took forever. About an hour after we were told to be there, they called us into the back room. My Caretaker was more nervous than me, which allowed me to be 'strong'. As long as I didn't think about what was about to happen, I was fine.

The surgeon in training assigned to me was very nice. We started with a little 'something' to calm my nerves. Then she positioned the frame. This was excruciating. Although the numbing shots worked, the idea of someone screwing this frame into my head was daunting. When they put the whole frame on, which is like a mask, it rubbed my head all wrong. More numbing shots but it never really felt right. The MRI was done with the frame on and I asked why they did the first MRI if they knew they were going to do the 2nd. Well, the simple answer is to make sure there wasn't anything 'wrong' in my brain. i.e. if there were a tumor or something, they'd rather know before scheduling the whole surgery thing. That makes sense.

My Caretaker was allowed to be with me up until the MRI, then for awhile after. When they finally took me to the OR, the main surgeon wasn't happy with the way the frame was attached and took the whole thing off and started over again. I have to admit it felt better the way he put it on - but back to the MRI for pictures with it in its new position. (A little tedious, but they had shot me up with some good stuff so I didn't really care much).

I don't remember the surgery itself. I remember them shaving my head and I briefly remember after they were done and told me it was time to put me out and insert the generator. Everything else is a blur.

I came back to my room where the Caretaker was waiting. Luckily he had brought a video game from a friend and was able to occupy his time. I have no frame of reference for time. I started my cover story.

The GF showed up at some point and I was glad she was there. She spent the night in the room on a couch. The pain was b-a-d. Worst headache I've ever had. About every hour I got a shot of morphine and from time to time some other pain killers. I got some good sleep from about 5:30 on.

The next day, under the meds, I felt pretty darn good. They checked me over and released me. We headed home. [more cover story things] All in all, everything went fine.

Sleeping in my own bed felt good. I put off taking the prescribed drugs until I 'needed' them, but then realized I needed to stay a little ahead of that schedule. It was still very painful without the drugs.

I've stayed relaxed and on the meds for the past couple of days. [I've changed the blog to eliminate more references that could be linked just to me - about the cover story etc]

2 days after the surgery I noticed the area around the generator had gone down in swelling. At first I had thought I might get away with no one noticing it - other than the scar. But as the swelling has gone down, it's outline is very apparent. Oh well, I'll deal with that when I have to.

Also, although the pain has been fairly significant, I've noticed more pain on the right side of my head. I finally put 2 and 2 together and realized the extra pain is from where they ran the wires. It's sort of like a sinus/jaw ache on that side. I can feel the leads in my neck and if I bend my neck just right, I can feel a little tugging of the wires. Interesting. Nothing bad - just different.

So I'll throw in the caveats here - anyone who has this is going to react differently. Everyone reacts to pain differently and I'm sure some will never notice the tugging of the leads. Hopefully in a couple of weeks, I won't.

I am doing well. I am still very hopeful that this works, but mainly I'm proud of at least taking some steps to do something about the depression. Whether it's working out, journalling or counseling, taking some positive steps to manage it, feels good.

All the medical staff were very professional and quite kind. Kudos.

I go back next week to get the staples out. I'm not looking forward to that. In order to hide the staples, I've been wearing hats. Most rub in the wrong place, so I tried putting a little anbesol on the staples before wearing a hat to a Christmas party last night. It seemed to do the trick and wasn't as bothersome as the hats during the day.

All the Christmas cards and packages are now in the mail and I can relax. I took another 1/2 of my meds and plan on watching movies and chilling the rest of the day.

Thanks to all the well-wishers. Thanks to my medical team and to my really outstanding friends, the Caretaker and my GF. I'm in a good place.

After surgery

All went well & I am in a private room resting. Thanks for all the support.

Sent via BlackBerry from T-Mobile

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.