tDCS-still improving
 

The most remarkable thing about my treatment is that atrophy in my arm is entirely gone. Although I still have atrophy in my hand I am working on that.

My range of motion continues to improve. The debilitating full body joint pain that has been my constant companion is now gone. Totally and absolutely gone! The allodynia is improving.

My quality of life, to say the least, is so much better! I am so grateful that the ever present drama in my life is vanishing. (constant researching new treatments and procedures, researching drugs, dealing with severe drug reactions, preparing for Dr. appointments with list of new questions, procedures and new treatment to try, educating health care professionals about state of the art treatments, the endless frustration of fending off physicians suggestions of invasive and potentially devastating procedures not backed by research data, always having one more option to try but fearing the desperation that would ultimately set in when that last option failed, feeling so ill that I could not walk, etc., etc., etc., etc.)

There is no question that tDCS has halted the progression of CRPS and is probably reversing it.

I am now beginning to think that remission may not be a long shot!

I truly hope my posts are of help to others! You all deserve the kind of improvement in quality of life that I have found!

Hi Ballerina,
I love your name by the way:) I use to be a dancer before I got CRPS, now I can barely walk and miss dancing a lot, but alas that is beside the point.
You mentioned there were three places in the US that offer TDCS. I was just wondering if you knew the name of those institutions?

Thank you so much for all your posts! What you are doing is truly amazing and inspirational to all of us that suffer with CRPS. I hope you continue to get relief from it!

ballerina:

It is wonderful to hear your symptoms are improving!!!!

I have a couple technical questions for you:

1. How did you go about figuring where to locate the anode pads? I referenced a paper by Valle, et al. that says they place it over C3 according to the 10--20 system for EEG electrode placement…..

2. Why did you decide on 3" x 3" pads?

3. on the doctor subject -- you(or other people) are happy with the partnership between you and the doctor -- is the specialty (neurologist?)of the doctor important or just hunt around?? I have given up on them all and am using a nurse practitioner at my primary doctor's office. At least she has time to talk and time for me to explain…

Thanks.

tDCS reference book
 

By the way -- for anyone interested in researching tDCS, TMS, etc. -- it is a relatively recent book that can certainly get you started. I got copy to read through interlibrary loan… name of it is:

Pain. Brain Stimulation in the Treatment of Pain

Editors: Helena Knotkova, et. al. , publisher is NOVA … publication date is 2010 -- so it is pretty close to being up to date.

It is a easy source for good summary articles. Includes a chapter on tDCS for CRPS, another one on tDCS for fibromyalgia pain, another one on safety of tDCS…….. you can look it up on Amazon.

here are the technical specifications for the Fisher Wallace device:

15.0
DEVICE
SPECIFICATIONS PARAMETER
NOMINAL
VALUE

Output
Amplitude
(milliamperes) 0‐4
mA

Rate 15/500/15.000
Hz
Pulse
Width 33
microseconds
Maximum
Charge
per
Pulse 0.13
microcoulombs
On
Time
per
Burst 50
milliseconds
Off
Time
per
Burst 16.7
milliseconds

so it is a AC current device that pulses??, not DC device.... tDCS is very low mA DC current...

any other comments?

1) The Institute for Noninvasive Brain Stimulation of New York, Beth Israel Hospital www.newpaintreatment.org/
I was impressed when I recently checked the website. Now they are actively seeking patients for tDCS treatment of pain. When I sought treatment there this time last year I had to work to get in.

During my treatment I requested to meet the lead researcher, Dr. Helena Knotkova. She kindly spent considerable time with me and was delighted to have a patients who was so knowledgeable in tDCS and its application. I also requested to be evaluated by Dr. Ricardo Crucianni. I received a thorough evaluation from him on my last day of treatment. Please see prior posts regarding my thoughts on tDCS at Beth Israel.

2) There is a brand new Brain Stimulation Clinic in Atlanta, that just opened this month. www.transcranialbrainstimulation.com/
This is offered through a private pain treatment clinic operated by Dr. James Fugedy, who I highly recommend. I had a consultation with Dr. Fugedy last fall prior to the opening of the Brain Stimulation Clinic. I did not undergo tDCS treatment in his office because I already knew I was a responder.

In my opinion Dr. Fugedy is the top person in the country in terms of knowledge and actual application of tDCS to patients with chronic pain. He is impassioned about his work and a real decent sort of guy, in addition to being very funny.

3) The Brenson-Allen Center for Noninvasive Brain Stimulation, Harvard Medical School. http://tmslab.org/
This facility has treatment, research and education components. I have not visited this facility but the researchers have been very helpful regarding my requests for information , clinical trials and research material.

Hope this is helpful!!!!!!

Helena Knotkova has been at this for a good while. This Book would be a great place to start-But keep going.

Hi Voner,

Question #1 I did the C3 protocol when I was treated at Beth Israel and had a positive response. The researchers were pretty exacting about precise location. That kind of precision was necessary because they were primarily a research institution. The electrodes are big enough that they cover many areas so getting it close is good enough. You can use diagrams for the 10-20 system, use the percentages to find the location. (You can find the 10-20 by doing a google search, try EEG Measurement and Setup, or EEG 10-20 International System) After you find it pm me if you have any questions.

I have tried three other protocols, (electrode placements) two had no effect and one worked better.

Question# 2 3" pads are the standard electrode at the three treatment centers in the U.S.

Question # 3 I had to kiss a lot of toads before I found my Prince PM and Neuro docs. In addition to consulting with top Drs. in tDCS, I find it very beneficial to have a partnership with both a PM and a Neuro. It also helps that they are on the same page, particularly regarding invasive procedures and CRPS.

Don't give up on Docs. Finding a good fit can be very hard. The hardest part with having CRPS is learning what defines a good fit.

Hope this helps!

Thanks!
 

Thanks Ballerina for this list! I'm bummed that there is nothing even remotely close to CA, but that often seems to be the case. Since I can't travel, I'll have to look into doing it on my own. Thanks for all your help!

Hi Lovefamilypets,

I am so sorry your CRPS has gone full body.

The beauty of tDCS is that it has been effective for advanced and treatment resistant CRPS.

I have a thought. Consider educating your pain management doc, (or whatever doc is treating you) and see if he/she is willing to be trained to offer the procedure. Another option might be to see if your doctor would be willing to try to arrange a long distance consultation with Dr. Fugedy in Atlanta.

Caution: You may be more successful going this route with doctor who is not a PM doc since "procedures" constitute the bulk of practice revenue. A neurologist may be your best bet.

If you are comfortable doing your own research. By research I mean going to original journal articles, not just the abstracts, to see what protocols are most effective for areas you want to target.

Do you know what caused your CRPS spread? How long have you had CRPS? Is it more severe in one area?