Here is an update on my home tDCS treatments, with the sincere hope that others will eventually follow and experience the kind of relief that I have experienced.

I will be seeing my neurologist next week after having not seen him for three months. I am quite sure he will not recognize me. When I last saw him I walked with a shuffle, I was hunched over, my hand was a useless claw and my arm was curled up like an injured bird wing, I was falling with the slightest provocation, I could not name the trash can in his office and I was wearing only a tube top on my upper body that was pulled embarrassingly low due to excruciating allodynia. I could not remember what I had for breakfast. I had the most miserable digestive symptoms. (This is only a very partial list of my symptoms) This time last year I was held captive in one room of the house with a space heater, only coming out for meals since I could not wear clothing on my upper body.

I had refused to use words to wind me up emotionally, words like "horrible","tragic", "overwhelming", "catastrophic", "horrific", etc., words that truthfully described my life.

I was and still am thankful that my condition was no worse than it was because I knew that at any moment it could take a nose dive, particularly if I had invasive procedures.

tDCS treatments have given me a new life. It has done what three years of physical therapy and countless sickening medications and endless specialists could not do. The dystonia in my hand is gone, my posture has greatly improved, my executive function has improved, I am falling less, I am beginning to use my hand, although it is still stiff. I can now wear a soft top for a few hours, which gives me time out from my one room prison cell.

Over the last several weeks I withdrew myself from all meds!!!!!!!!! (once again something that my docs and PT cautioned me not to do.) It was no cake walk and very scary but now I am slowly adding meds back a little at a time and when the process is through I know I will be taking less medication.

For those coming behind me tDCS is not a cure but a remarkable weapon against CRPS. If I over do it I am taken down. Since I know what takes me out I avoid it. Additionally, like Ketamine infusions, the treatment wears off and booster treatments are needed. Like Ketamine, it works for some and not others. Unlike Ketamine the procedure has no documented side effects, and is very affordable if done at home.

I am developing my own booster treatment schedule since I have found nothing in the literature regarding booster treatments.

The best thing about treating myself with tDCS is the reduction of fear about my future, fear about desperation leading me to invasive procedures that have a high risk of making me worse, fear of doctors pushing treatments that benefit their bank accounts more than my body, fear of not being able to afford treatment, fear of endless pain becoming an all consuming sink hole, fear of yet another visit to another doctor ending in disappointment, fear of becoming so mentally and emotionally depleted that depression would be as much of a problem as the CRPS, and fear of having little control over my own treatment.

Although I have a great treatment team it is still a team lacking in permanent solutions, like all other treatment teams, both good and bad.

From the day I was diagnosed I have felt as though I am either dragging physicians behind me, or fending off invasive and or barbaric procedures suggested by some of the top CRPS docs in the country. It has been a lonely, exhaustive, intellectually isolating and spirit depleting journey. Thankfully I believe the worst of my journey is over.

I am listing my suggestions for anyone wanting to try this treatment.

There are currently three places in the country doing tDCS. The major drawback of this limited treatment option is cost, both travel and accommodation and the cost of the treatment itself. A second drawback, which to me is a big one, is the limited treatment protocols.

My treatment at Beth Israel, for instance, consisted of one twenty minute treatment per day for five days. I do not believe that this protocol is enough to establish a positive response. Although I did have a positive response it was not until the end of the week. I was told that I could shell out more money and continue or return in a few months. (typically, insurance does not cover this treatment)

Additionally, the electrode protocol used for my treatment at Beth Israel is not as effective as the one I am using now. Although I have nothing to base this opinion on but a hunch, I suspect that since Beth Israel is conducting research on tDCS they are stuck in the "this is our research protocol" rut. I think there is a bit of navel gazing going on. Since my initial treatment I have discovered other treatment protocols that work beter. Picking the brains of folks at all three tDCS treatment facilities was very helpful to me and spurred the kind of critical thinking that led me to my current treatment protocol. My current treatment schedule is twice daily for two to three weeks.

If considering visiting a treatment center do your homework first. Research tDCS treatment protocols for your area of pain. Inquire ahead of time regarding the electrode placement used.

Better yet, see for yourself if you are a positive responder by purchasing the unit yourself and treating yourself twice a day for at least two weeks. It is a whole lot cheaper that a week long stay at the Holiday Inn and at least $1,000.00 for treatment. For less than $275.00 you can be set up at home. No monthly co-pays or worry about insurance coverage.

If you can use a tens unit you can operate tDCS technology.

PLEASE, PLEASE CONSIDER THIS TREATMENT PRIOR TO UNDERGOING RISKY AND INVASIVE PROCEDURES THAT HAVE POTENTIAL SERIOUS SIDE EFFECTS.

One final word. I believe that very soon some doctors will be offering this treatment in their practices. My own pain management physician has decided to offer it. I firmly believe that this treatment will be very slow to catch on with many pain management docs whose bread an butter comes from insurance reimbursed procedures. My doc does "procedures" three days a week. My hunch is that the cost of tDCS will be excessive since there is no money to be made from insurance reimbursement and the practice has to keep those dollars coming in. Additionally, what will happen to practice revenues if patients like me who are positive responders abandon the invasive and lucrative procedures forever in favor of tDCS. (I m sure my PM doc is asking himself that question.)

Skip this whole morass and purchase your own unit!

I pray for all of my fellow Complex Regional Pain Syndrome friends to have the kind of Happy New Year that I look forward to!