Originally Posted by kathy d (Post 823673)

Thanks Jonathan for sharing your knowledge and professional opinions with us. It is nice to know that professionals like you do exist since we have all seen so many people that just don't care about us and want to give us meds and send us home to suffer alone.

I've had full-body rsd and some other neuro diseases for over 6 plus years now and like said above I will not own them. I firmly believe I will be completely cured of rsd. I think a positive mindset is a huge tool in getting rid of it. I have used and done every kind of pain med, med, PT, lidocaine, ketamine, etc...the list goes on and on. What I have found that worked for me was gentle chiropractics, Reiki (with some Qi Gong), Accupuncture, meditation, and the last year natural vitamins and minerals in an iv that started out every two weeks and now is once a month. I do pray alot and try to laugh once each day no matter what. I think of rsd not as my disease but as my journey. Also, before rsd I had taken about two years of yoga which has helped me immensely esp the breathing and meditation parts of the program. I have put myself on my own PT program and I am doing better now that last year after I suffered a fall in ICU during ketamine treatment...I thought I was going to die for months the pain was incredible. And I was withdrawn on fentanyl cold turkey which was not a pleasant experience for sure. This is not a fast journey but it is a journey that must be taken both mentally and physically as well. Boy, now I sound so new age huh? lol. I have always believed in a more natural approach to any illness and prior to rsd never even took tylenol.

I am very happy to hear any other ideas you may have that would help us. You should be so proud of yourself for helping us...like I said not many professionals really understand or take the time to understand rsd and what we go through each day. It is a pleasure to know you.
Thanks,
kathy d

Originally Posted by CRPSjames (Post 859654)

I spent a bundle of money on some of the mentioned treatment approaches. Although the ones I tried were totally ineffective for me I hope they work for others.

If you are limited due to finances you might want to consider tDCS prior to the others. It is non-invasive, very safe, cheap and has a good track record with chronic pain. I wish I had found it early on when I was first diagnosed. Given the strides I have made with it I suspect I would have had a chance at early remission. At the very least it certainly would have kept me from being maimed by the Boston Scientific Spinal Cord Stimulator that caused a debilitating spread.

For an outlay of about $300.00 you can treat yourself at home for as long as you need to.

Originally Posted by CRPSjames (Post 859654)

I spent a bundle of money on some of the mentioned treatment approaches. Although the ones I tried were totally ineffective for me I hope they work for others.

If you are limited due to finances you might want to consider tDCS prior to the others. It is non-invasive, very safe, cheap and has a good track record with chronic pain. I wish I had found it early on when I was first diagnosed. Given the strides I have made with it I suspect I would have had a chance at early remission. At the very least it certainly would have kept me from being maimed by the Boston Scientific Spinal Cord Stimulator that caused a debilitating spread.

For an outlay of about $300.00 you can treat yourself at home for as long as you need to.

Originally Posted by SonshineEvie (Post 859551)

I am hoping to begin neurofeedback soon. I also am working with insurance. I noted some of the costs listed by other posters and wanted people in Southern California to know that one of the doctors listed on the article for the research, Caroline Grierson is right near UCLA. I talked with her about costs and she said that she charges $250 for a 2 hour initial assessment and then $125 for each session. This sounds much more reasonable then some of the others. Hope this helps someone! :)

Originally Posted by blueskies (Post 861166)

Glad to hear you've had success with tDCS, but I'm sorry to hear you spent so much money on something that was ineffective. I take it you tried neurofeedback, which is a lot like saying you tried learning a new language. I have spent a great deal of time trying to sort the good from the bad, and it is not an easy task. That said, it is next to impossible for a consumer to make an informed decision without investing major time and research into the field. Some people use Z-Scores, whereas some use Othmer's approach, whereas some use QEEG, where some use a mini-QEEG, etc., etc. Anyway, I wouldn't want to take money from someone I didn't help, so I would split the difference if I invested my time and effort. I know most people wouldn't do that, however.

Perhaps you are right about the tDCS for CRPS--the more I read about it, the more convinced I am, but I am still unwilling to incorporate it into my practice due to people's love of lawsuits.

What is the brand you got for $300? Maybe Eve can give that a try before investing in neurofeedback.

Originally Posted by catra121 (Post 861221)

For my tDCS treatment I got the Activa Dose II unit and it cost $225. With the purchase of the sponge electrodes, pin connection TENS wires, and the pin to banana coverters so that I could use the unit for tDCS it cost about $300 total for the unit. I don't know if CRPSjames uses the same unit or not but thought I would share as it really is very inexpensive compared to so many other things.

Originally Posted by blueskies (Post 861167)

Part of me wants to treat people for free, but I realize this is not compatible with living, so I don't mind treating people who need help if I have to take a loss. I think $125 dollars is expensive, which is why I originally learned neurofeedback to begin with. As I mentioned before, I would recommend you try mindfulness meditation, and I suggested exploring tDCS, and afterward saw the thread on here about the many wonderful experiences people are having using tDCS.

I am curious what kind of an assessment she does with you. There are several schools of thought on neurofeedback, and it would seem she uses the Othmer approach from looking at her website. If you have any questions about neurofeedback, please feel free to *ask*

-Jonathan