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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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#1 | ||
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New Member
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Hi everyone, I am a new member but have been reading consistantly the past few days and decided to join. My Mom has RSD stage 3, she's had countless doctors in a number of states that have tried nerve blocks, EEGs (several times, I think that's what its called, where they test the nerve), she is on a slew of narcotics (morphine, percocet, and the marijuana pill) with no relief, she also has fibro, seizures, and from my research I think gastropherisis.
I've done a lot of reading and followed a few of your stories with your success with tDCS, the next step her dr is looking at is radiofrequency neurotomy, which I have read the best results from this procedure. She has a TENS unit, but from what im gathering the TENS unit and a tdcs device are two different things right? If anyone can point me in the right direction as to where I can purchase a tdcs device and the protocols for the certain placements for pain relief I would GREATLY appreciate it. Thank you all and gentle hugs! |
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#2 | ||
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Magnate
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I would really research RF before moving forward. Some have had relief, and other's have had very bad results. I was unfortunately of the latter group. Hooshmand advises against it on his blog. It increased Sensitivity to the point that wind and vibrations cause me major pain, which encourages me to be a hermit... It's a gamble I will forever regret, because I didn't research it at the time.
If she can undergo Ketamine, it works well for some (and not for others). As well as a plethora of other meds and other treatments. |
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#3 | ||
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New Member
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Thank you for your response! I think I've convinced her to cancel the surgery with the research I've provided, with a more hopeful outlook towards tDCS. If I can manage to find where to purchase a machine.
The ketamine is still something to be researched as well, but pretty pricey from what I've seen so far.! |
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#4 | ||
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Magnate
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Ketamine outpatient runs in the $400-2000 per session and insurance companies are authorizing the procedure with greater and greater frequency. My insurance company approved one initially and then additional because I responded well. Inpatient is incredibly expensive, and also has the better rate of remission, but baby steps aren't a bad way to approach things. Warm water PT is helpful to many of us.
Staging isn't really done anymore, because it was not very accurate. Making sure she has a knowledgable RSD doc, is really key. |
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#5 | |||
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Senior Member
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I followed ballerina's recommendations on where to purchase the unit. It is on page 2 of the tDCS thread, post #20:
http://neurotalk.psychcentral.com/thread160980-2.html I did need a Rx for the unit to purchase from this particular website though. I have heard from others that there are places you can order online that don't require one...but I don't know which ones those are. I did not need an Rx for anything other than the unit itself though. All together the cost for the unit and the other materials was about $300. I did all the treatments on my own. I have outlined my current protocol many times on the tDCS thread but if you have any additional questions, please feel free to PM me about it. |
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#6 | ||
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New Member
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Thank you Catra! I did actually find that info on page 2 after I had posted this thread : /
I also found another device as well, its a little more expensive at $380..here is the link, if you or anyone has any reviews or info on it, Please share! It looks decent... Nevermind..I can't post the link since there is only 3 posts...??? And being new to this site, familiar with other forums, but for the life of me can not figure out how to add a group to my "favorites" or how to pass a message to someone.. LOL. Pointers anyone?? |
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