Ballerina:

Great for you.

I love your attitude & I love this quote of yours:

Me too!! I spend half my time at a doctors appointment educating the doctor -- and then, of course, they charge for an extra long appointment time!!

I have been doing my research -- I have a physical therapist who is quite interested in these techniques (he is a big proponent of mirror therapy, etc) -- but I would like to use him for what he can do for me that I cannot do myself. So I am out there trying to research and figure out which device to buy, what electrodes, etc.

I have looked at the numerous of the recent publications on tDCS and high density tDCS devices that are under development. I noticed that at Spaulding rehabilitation Hospital (Beth Israel?) They are testing a high density tCDS device on mechanical allodynia and hyperalgesia -- which is which are some of my most debilitating symptoms. I would love to get some information on that experiment. information on the exact placement of electrodes for allodynia and hyperalgesia would be very useful.

I am also intrigued by vagal nerve stimulation. In the spirit of do what you can for yourself, I did run across a paper in a yoga journal where some dudes measured brain activity in a fMRI while people chanted “Ommmm”. Kind of makes sense – your vibrating your vagal nerve mechanically – like a Vegas nerve stimulator that is implanted, etc.

here is the reference (since I do not have enough posts on this forum -I cannot post Web references -- and apparently I cannot personal message people either):

title: Neurohemodynamic correlates of ‘OM’ chanting: A pilot functional magnetic resonance imaging study



I found this wonderful forum while researching tDCS…. you folks sure know a lot!!

voner

Hi Vioner,

Welcome!

Hope these suggestion help you on your journey.

1) To cut down on the frustration of physician education on your own dime and time try the following. When I needed a referral for my first tDCS treatment at Beth Israel I prepared a binder of pertinent tDCS
research material for both my neuro and pm docs. One binder was geared toward neurology and the other toward PM, with notes attached to please review prior to my next appointment. Prior to my appointments I called the office to inquire if the materials had been reviewed and if not I would need to reschedule my appointment. One doc had not so I rescheduled and no they could not charge me a less than 24 hour fee because I was prepared for the appt. and he wasn't. (Happily this doesn't happen any more)

Both docs reviewed the materials and although their levels of knowledge were at a basic level I got what I wanted-referrals.

2) Regarding the research you mentioned at Spaulding-I am assuming that the research is not readily available. I suggest contacting the lead researcher to express your interest in the research and request either a copy of the research or a summary of findings which they may release prior to publication.

Additionally, you may use any friends or associates connected with higher education or a medical school to get published research articles for you.

3) It may be useful to consult with a doc familiar with tDCS and its application for your particular diagnosis. I would in general be wary of PM docs unless they list tDCS on their websites. Most pm docs butter their bread with costly procedures. The more costly the procedure (thus the more lucrative) the less likely they will be to consider offering a low cost, extremely effective and non invasive treatment with no side effects. Please do not underestimate the big business of costly, risky and invasive procedures many with short lasting, damaging or no results, and the threat that tDCS poses to the ever growing medical procedures/pain management industry.

Best to you!!!!

Ballerina;
Would you consider posting a youtube video on how you use the unit and where you apply the pads? This is such an inexpensive option to try I think the more info we can learn and share it could help a lot of people out. Thanks so much

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:

--Begin Paste
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.
--End Paste

[

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

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.

Hi sberube,

What a good idea! Happily for me since I am camera shy, it has already been done. Please see below
http://www.neuromodulationlab.org/in...=13&Itemid=70#