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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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HI Jonathan,
Thanks for your post and your willingness to inform us about a posible form of treatment that unfortunately is out of the mainstream of available treatment. I pursued a neurofeedback consult on my own and was given an overview of a treatment plan. (I have RSD primarily in my left limb which has crossed over to my right, and possibly creeping north to my hips and lower back) I asked my P.M. doc to request it (mine is a worker's compensation case) and of course it was declined. We wrote many letters to the ins. compnay and finally they agreed to ten sessions. Then I discovered that the neurofeedback treatment required a test ( a mapping of the brain with electrodes) which costs about $1000. The ins. denied this very important part of the treatment, as with this test, they know exactly which part of the brain to target. Otherwise, they said, it's like groping in the dark without a specific target. They also said it would take at least a year of weekly sessions for the treatments to present long lasting benefit. The weekly sessions are costly and the WC ins. wouldn't approve the mapping test nor further treatments. I really wanted to try this as I have read much about the neuroplasticity of the brain and how it can be altered and corrected, and ultimately gets to the real issue of the pathology. My questions are: What would be the minimum amount of treatments to provide long term correction? Is the brain mapping test really necessary? (I think it's called a QEEP) or can sessions be done without it? How would the technicians know what specific part of the brain to target without it? I know each individual is different with different needs, but what would be the minimum amount of sessions needed to affect a permanent change in brain pattern? Gi gong, Tai Chi, yoga and meditation are all ways to quiet the sympathetic nerve..they have been practiced for hundreds of years. It is sad that our culture sometimes looks at these as 'new age' and therefore not taken seriously. Fortunately, our western medicine practices are beginning to recognize and accept the benefit of these practices as they are backed with much scientific evidence. Thanks so much for bringing up these important topics and sharing the uplifting positive results!! Hope4thebest |
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Junior Member
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I think if I were you, I would first invest in some relatively inexpensive biofeedback equipment that you can find online. Biofeedback is for some reason not mainstream, but it is truly amazing how one is able to control the nervous system through conscious thoughts.
Did you know you can change the temperature of the skin of your finger through biofeedback? I now train my finger temperature every night before I go to sleep. It's like taking a xanax for me... once my finger gets up to about 97.5 degrees, I can hardly keep my eyes open. Biofeedback is pretty amazing, but don't just take my word for it... go to the RSDS org's website and search for the 2005 article on biofeedback. Now that I am thinking about it, if you can't afford neurofeedback (and even if you can) I would first start off investing in straight biofeedback gear and train to balance your sympathetic nervous system. I would first invest in a $20 temperature trainer that you can find on Amazon. Then I would invest in heart-rate variability hardware, such as Resperate or Heartmath. Ask your doctor what he thinks of training heart rate variability and he will probably look at you with a crooked head. Then do a pubmed search on Heart Rate Variability (HRV) and you will find over 12,000 articles to support its importance. HRV measures the variation of the timing between each beat of the heart. When it is not functioning correctly, stress, anxiety, and autonomic dysfunction ensue. Note the following 2010 article that shows Heart Rate Variability is not functioning normally in individuals with CRPS: Increased sympathetic activity assessed by spectral analysis of heart rate variability in patients with CRPS (You will have to look up the article in Pubmed because I can't post links yet) In order to correct HRV irregularities, you need to focus on proper diaphragmatic breathing to balance the oxygen/CO2 ratios. The Resperate device helps with this, but Google diaphragmatic breathing for more information, as it will take me too long. But one tip I have is to lay down and place a book on your stomach and try to raise and lower the book slowly and evenly. That is the proper way to breathe, otherwise we starve ourselves of oxygen and increase sympathetic tone. Put tiny colored dots all throughout your house and on your car rear-view mirror to remind you to breathe correctly, otherwise you will not remember to do so. I would recommend a great book for you called Biofeedback and Somatics by Eleanor Criswell. Don't be turned off by the new agey book cover (I was at first), because it's a wonderful, compact book on Biofeedback. Either that, or find yourself a Biofeedback practitioner in your area who can help you with all of this! So now onto neurofeedback... this is not a cheap field. I am very new to the world of neurofeedback, and right now am in the process of being mentored for the BCIA neurofeedback certification. As you might imagine, it's a very complex process and there is a lot of information to take in. The reason I got involved in neurofeedback was actually personal, not professional. I have anxiety issues, so I happened to learn about neurofeedback and found a psychologist in the area who specialized in it. The person wanted to charge me $2000 for 20 sessions, and I thought that for $2 or $3,000 I could learn it myself and incorporate it into practice. After all, I'm a licensed therapist, so practicing neurofeedback is in the scope of my practice. In addition, I wasn't sure if my problem would be solved in 20 sessions. Besides that, my brother has stage fright issues, so I wanted to help him too. $10,000 dollars later... and here I am ![]() The test you were ordered to take was called a QEEG. It is an assessment that provides about an hour-long snapshot of how your brain operates on a global level based on measuring 19 EEG points on the scalp. There are several schools of thought on how to go about determining a treatment plan, and one of them is to use a QEEG. Another that is becoming very popular with clinicians is called Z-Score training. In Z-Score training (Offered by Brainmaster, Nexus, Thought Technology, and various others), your brain is compared to a database of 650 "normal" high functioning brains as you train. Another way to take an assessment is using a mini-Q (Brainmaster's system) or TLC Assessment (Brain-Trainer system), which is basically like a mini-QEEG, and in fact I already have a $6,000 Nexus 10 and am thinking of purchasing an inexpensive (but very good) Pendant so that I can have the ability to do a TLC assessment. If you're interested in training yourself in Neurofeedback, I would look into either a Brainmaster (about $1,500) or a Pendant (about $1,000). You could buy the equipment and then find someone local to do your TLC assessment and set you up with a protocol. Or maybe you can find someone who will rent one to you? As far as how many sessions you would need, I don't know. I am just starting in this and have only treated two friends ![]() This post is going to get ridiculously long if I keep writing, but I hope I helped answer your questions. If this post helps any of you, pay it forward and post on another board devoted to CRPS to spread the word. If I can be of assistance, please let me know! -Jonathan ** |
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