Hi sberube,

What a good idea!!! Happily, since I am camera shy, there is already a good one out there. Please see the following:
http://www.neuromodulationlab.org/in...=13&Itemid=70#

Hope this helps!!!!!

Thanks Ballerina for the link!
Btw I contacted one of the Doctors **

And wanted to share his response:

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Dear Steve,

60-70% of patients respond to tDCS. This has been my experience which is similiar to to that of the published studies. The problem with quoting this statistic is that studies utilizing tDCS for CRPS have small patient populations. In addition, studies using tDCS for chronic pain include patients with CRPS, but you really can't extrapolate the results for CRPS, because results may be skewed by the different conditions treated. The duration of relief provided by 5-10 treatments is about 3 months, when tDCS needs to be repeated.

Finally, non-responders to the protocol used for treatment may respond to a different protocol or to a longer period of treatment. Currently, there are 3 locations which can be stimulated to provide pain relief. These can inhibit pain, reduce sensitivity to pain and decrease the emotional component to pain.

I have used tDCS for patients having spinal cord stimulators. There is additional pain relief when tDCS is added.

Individual case reports of patients with severe pain treated with tDCS for longer periods document greater pain relief -up to 60% reduction. Most tDCS protocols still use 5-10 treatments.

I hope this information is helpful.
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[

This quote sounds like Jim Fugedy. Am I right?

As regards the length of time pain relief is provided I offer my experiences. When I first had tDCS at Beth Israel one year ago my relief began to slowly wear off and was gone by about three months. When I began in November the positive effects came to an abrupt halt when I got a minor infection. I am currently treating twice a day for twenty minutes and will do so for at least another week. Since I don't want the slow wear off thing or the abrupt halt I will be treating once a day every three days for a week and then once a day every five days to see how far that takes me.

I will share how well this works for me.

Ballerina, You are correct it was him

Ballerina -

I will not make elaborate excuses for being away so long, I was most if the way through a lengthy missive to you last week when my browser had the good sense to crash under the weight of over a hundred open tabs.

Long story short, I finally have the support of a doctor who will work with me doing tDCS. After my pain doc passed last week because he prefers to work with FDA approved therapies. (When I asked him who in industry could come up with the matching funds that appear to be necessary for an NIH grant in support of the requisite multi-center double-blind study, he suggested "EverReady?")

But today I had a long appointment with my psychiatrist, during which I not only brought up tDCS for what must have been about the fourth time and cataloged the declines in my organizational abilities, short-to-medium-term memory and word recall issues, but focused on something I had come across the night before. A line from a report that was done by a neuro-psychologist who tested me late year:

His performance on verbal fluency, a measure that also assesses left prefrontal function, was in the average range (58th percentile).

That got my attention because in high school, I was winning extemporaneous speech competitions all over the place. So it occurred to me that if I was at the 58th percentile, I had probably burned through a lot of "cognitive reserve" along the way.

At which point he pulled up my 2007 brain MRI study and saw that the neuro-radiologist had noted 1 - 2 cm of "probably non-consequential scarring" on my left parietal lobe - he couldn't access a 2010 study off-hand - but that was enough to convince him that something organic was almost certainly going on (see, Neuropsychological deficits associated with Complex Regional Pain Syndrome, Libon DJ, Schwartzman RJ, Eppig J et al, J Int Neuropsychol Soc. 2010 May;16(3):566-73 http://www.rsds.org/pdfsall/Libon_Neuropsychol_2010.pdf) yet all of my other treatments were essentially palliative.

And despite the fact that his instinct is that tDCS doesn't covey a sufficiently power to alter "thalamic bursting" (see, Abnormal thalamocortical activity in patients with Complex Regional Pain Syndrome (CRPS) type I, Walton KD, Dubois M, Llinás RR, Pain 2010 Jul;150(1):41-51 http://www.rsds.org/pdfsall/Walton_Pain_2010.pdf) he acknowledges (1) the studies that have shown significant if transient improvement from a limited series of tDCS and (2) that not many SCS vendors would argue that treatment with their units must be done on anything less than a continuous, let alone, daily maintenance basis.

So on that basis he'll do it and write my prescriptions for all the stuff so it comes out as a non-reimbursed medical expense. That, and the man used to serve as an editor of J. ECT, so he's comfortable with electrode placement, etc.

Hey, I may be late to the party but I'm also the most recent arrival! (Ever see the 1973 film of Eugene Ionesco's Rhinoceros, starring Zero Mostel and Gene Wilder? On point and incredibly funny.)

Mike

Welcome to the party! I am thrilled beyond words! I know only too well the frustration of trying to bring doctors around. I am not surprised that your pain doc is not on the same page as you. Regarding his fear that tDCS is not FDA approved I am curious to know if you doc implants SCS in patients with CRPS since FDA approval was based on conditions like FBS, not CRPS. Boston Scientific management admitted to me that PM docs use SCS for CRPS "off label." tDCS as an off label use for FDA approved iontphoresis is no different, (except of course that it has virtually no side effects and can't put a pm doc's kids through harvard)

Regarding you shrinks comparison of tDCS to SCS he may be comparing apples and oranges. The stimulation in SCS only masks the pain. tDCS targets the root cause of CRPS, cortical reorganization.

I have a suggestion. To prevent yourself from paying for your shrink's training with your time and co-pays please consider giving Jim Fugedy a call (Transcranial Brain Stimulation Clinic Atlanta, Ga.) to see if you can arrange for a video consultation between the three of you. It could save you both time and frustration through experimentation and trial and error. Jim Fugedy has a particular interest in tDCS and attentional deficits.

Additionally, if I may tread for a moment where I have not been invited, a thorough review of all meds, perhaps with a good internist, may be in order to see which meds, if any may be contributing to some of your executive function issues in addition to your neuropathic pain. Sometimes PM docs and shrinks, for a variety of reasons, don't regularly perform this kind of evaluation.

Sending you hugs my friend!!!!!!!!!!

Please keep everyone posted!!!!!

I am doing the happy dance for you!!!!!!!

Hi. Thanks for the support! In the interest of time, I've responded to some of your specific comments in blue.

Mike

Steve, I'd be curious to learn the 3 locations the physician was referring to. I'm assuming they are the motor cortex used in most studies to date, the motor cortex/secondary somatosensory cortex that ballerina benefits more from, and the prefontal cortex for the emotional components to pain (which does not appear to be as efficacious as motor cortex). But...maybe he knows of something else. Would love it if you could get this information to us.

As many of you probably recognize, the brain changes dramatically with chronic pain, and brain stimulation ultimately works because it helps to restore normal brain function.

There are some authorities who argue that one can improve their pain condition behaviorally by focusing effort on using the parts of their brain that have become compromised and avoiding the parts used to excess. Memory and executive decision-making, for example, suffer dramatically from chronic pain, whereas fear, anxiety, and catastrophizing become excessive. Brain imaging studies reveal the parts of the brain in chronic pain that are hyperactive and hypoactive. With many or most chronic pain conditions, and certainly all CRPS, the perception of pain ridiculously exceeds the pain signal generated at the painful area. In essence, the pain is mostly if not entirely manufactured by the brain (this is not to say it is made up; it's very real). Extinguishing the pain becomes virtually impossible, and medications and conventional treatments will fail most patients.

I'm personally acquainted with the guy who runs the new pain program at the Betty Ford Clinic in Palm Springs, CA, and he claims that with intensive therapy all of his pain patients can gain pain reductions of 90% or so during the 6-week program. It's very expensive (roughly $1,000/day, which insurance may not cover), focused heavily on addiction recovery (they will take you off all opioids and benzos and engage you with the 12-step recovery program), and takes advantage of group therapy, which he insists is very helpful. I've been trying to convince my wife to give this a try, but she is not ready for it yet. I personally am convinced that many pain patients will benefit from a program like this and regain their normal lives.