Tuesday, June 30, 2009

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).

2 comments:

herb said...

Thanks for taking the time to respond and updating your status.

First point I would like to make is keep up your sense of humor. It is important and so too your persistence and maintaining hope. I do understand severe depression very well. In our case it took almost 4 decades to overcome and obtain some control over my spouse’s Major Depressive Disorder.

Incidentally, may I also suggest for your consideration dropping the term “TRD” (Treatment Resistant Depression) as CMS (Centers for Medicare/Medicaid) has stated there is no such terminology in the DSM IV. The point being those sponsors of the DBS trials for depression I’m sure has studied and learned their lessons from the VNS fiasco. If and when they submit to the FDA for approval I’ll almost guarantee that terminology will be absent.

I also would like to thank you for directing me to the Yahoo DBS group. Their are a number of very well informed and caring individual sharing experiences and information which also brings me to another important point.

Regardless of the fact than anyone was a control subject and recently activated what is most important is the result. If achieving that end result means being assertive in advocating for one’s wellness then in my opinion do so. This very fact can be read repeatedly by reading some of the postings to that Yahoo forum. What was of particular interest to me, although many of the participants are Parkinson patients, is the fact that they were able to modulate their depressive mood state through the adjustment of various parameters and something I think the Depression patient should not lose sight of in the event favorable results are not obtained early on.

In all likelihood, those study patients who were initially activated probably all had the same settings in order to maintain control for purposes of data gathering and determining efficacy.

Unfortunately there are no guarantees with any of these newer neuro-modulation therapies for depression as there are obviously no guarantees of wellness from medications either. As patients and/or one’s support person we are faced with what I refer to as the “Trial and Error Approach to Wellness”. I encourage those who have suffered decades from MDD to not be fearful of experimentation.

Once again, I thank you for taking the time to share with me and others having interest in these matters and your personal experiences. I continue to endorse patient education while also encouraging hope and persistence. I truly hope with time, effort and assertiveness that you’ll achieve the wellness, stability and remission that you’ve set out to seek in this adventure and that you’re sharing lays the groundout and encouragement for others.

Warmly,
Herb
VNSdepression.com

DionneAshley said...

I have to say, I find this REALLY fascinating, as a person who suffers from bipolar - particularly mind blowing depressions and chronic dysthymia - and is resistant to every anti-depressant medication I've tried (and I've tried A.LOT; SSRI's, SSNRI's, MAOI's, Tricyclics, and every other class of neuroleptic, anti-convulsant, blah, blah, the list goes on)... COUNTLESS medications since I was 12 years old.
I am going in for an assessment on the 20th of this month for Electro Convulsant Therapy (ECT) as a sort of desperate measure. So, naturally, this trial you're participating in intrigues me! I hope that you continue to post, as I would love to hear more about it!
I'm really glad a stumbled across your blog and I do wish you the very best!
My blog is;
http://www.mylovelymuse.blogspot.com
Feel free to check it out - it's a lot of photography with some journalistic-type prose, poetry, and other blogs I find compelling - I'll add yours to the list!
Thanks again!
CHEERS!
Dionne
AKA: "gogoloopie" on flickr and blogger.
:)

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