Hi Gabby,

It sounds like you've been through quite the experience. I'm sorry to hear about all of your procedures, but I hope that you are starting to feel better and regain some of your function. I am not an expert in ketamine, as I am an occupational therapist, and not an MD, so this is not a treatment option for me and therefore I must explore alternatives that are within my scope of practice. Luckily, much of the alternatives I find seem to be more holistic in the sense that they balance the entire mind and body's state of arousal, and therefore affect all of the physiological systems at once.

For contracture, I have had very good success using ETPS with deep dissure massage and perhaps static-progressive or dynamic splinting over a long period of time. Splinting in this fashion helps to elongate, and sometimes release the tissues, whereas ETPS seems to somehow (and I have no idea how) release some of the scar tissue. I have used it with some very significant scars and saw some amazing results. Most OTs/PTs don't use this technique, so find someone in your area who has been trained in ETPS. ETPS also apparently helps with CRPS, but I have yet to use it with this condition, so I would reserve judgment until I do so.

I would recommend for everyone here that they explore Qi Gong and mindfulness meditation first, and neurofeedback second. I am a very scientifically oriented person, and I recommend meditation and Qi Gong based on observation and also research. I personally would combine mindfulness and Qi Gong with neurofeedback.

Perhaps you might also look into the literature on transcranial DC electrical stimulation (tDCS), as well. I haven't investigated whether this has been used in CRPS, but I imagine it has. tDCS is a very safe procedure whereby a small DC current is sent through various parts of the brain. Go to pubmed and search for it--you will be impressed at the research. It is similar in efficacy to transcranial magnetic stimulation.

Since tDCS is more invasive than neurofeedback, it is not something I incorporate into my practice, but I present it to you for informational purposes only. I don't recommend you pursue DC stimulation by yourself without first consulting an MD/psychiatrist who specializes and has experience in the area. (There aren't many.) If you find someone who specializes in it, you should be able to buy a unit for around $4-500 dollars and do it at home with instructions from an MD.

Hope you are feeling better... and I hope this information helped!

-Jonathan

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!

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.

CRPSjames,

Thanks for correcting a prior post which referred to tDCS as being invasive and quite costly. I also tried some of the above mentioned treatment with no improvement. I did not make much significant improvement in symptoms until tDCS. I expect to be using it for the rest of my life or until I go into remission. I am banking on remission!!

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.

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.

Where did you get the unit from? I saw it advertised for $280 on a site.

Also, does it go up and down in increments of .1 mA-min and do they sell the pads and bands?

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

Hi Jonathan - Thanks for your response. I never received the treatment. Trying to raise a baby (now toddler) and other life circumstances have left me focusing on everyone but myself. I am still considering it, and also will now check into what others are saying about the tDCS. Where are you located? I was confused as to if you were in the LA area?