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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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Junior Member
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Thanks for the response. I had no idea TMS carries the risk of seizure. That is not something I need to add to my list of diagnoses. Yes, you are right, I would hate to shell out a bunch of money just to be a guinea pig (not that I haven't done it before, but I would like to avoid it again). Thanks for all your help! |
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#2 | ||
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I haven't followed the technology since late 2009, but they were developing a unit for deeper penetration, and the risk of seizure was much greater--which was hampering development. But...maybe the units are now available. Again, I think the evidence for pain efficacy is stronger for tDCS than rTMS, and at a minute fraction of the cost. |
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#3 | |||
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Dear Bill -
Thank you for taking the time to write your most recent and considerably detailed post. I have never had depression on the scale your wife has experienced. The closest I can come was my beloved and wonderful aunt by marriage, a classic late-Sixties earth-mother, who developed postpartum depression following the birth of her second child - frankly discussed her suicidal ideation with her husband - and was in extensive psychotherapy for a couple of years before rebounding to the point that she wanted another child. Tragically, the baby died in an accident a few weeks after her birth, one for which my aunt believed herself responsible, and unable to live with the contradictions, died a few days later. (Then too, there was my little sister's fiancé . . . ) So I appreciate the potential lethality of severe depression all too well. This has to have been an enormous burden on you, day-by-day over all the years. I can address a few of the other points you make: Quote:
Then too, i.v.’s pose a special problem for people with RSD/CRPS. In 2004, I was being worked up in Philadelphia for a ketamine coma treatment in Germany that never happened, due to my preexisting glaucoma and the role that ketamine plays in elevating intraocular pressures. (Years later I learned the a mannitol drip would have resolved this issue completely: I have no way of knowing if that information was known to the German physicians in the study at the time, but I understood that a Dx of glaucoma was a per se exclusion criteria of their study.) In any event, before anyone had brought my glaucoma to the attention of the physicians in Germany, the protocol first required that I have and fail a 5-day continuous lidocaine infusion. Dr. Schwartzman correctly predicted that it would have no effect on me, but we had to put on the dog and pony show. Except that the nurses were unable to insert the 20 gauge 3-lead lines into any of my veins. Dr. Schwartzman saw this and matter-of-factly noted that my vasoconstriction was so advanced, a “central line” would have to be (surgically) inserted into my chest. Trust me, PICC lines – which were just then becoming widely available - are a vast improvement. Today, before I have any procedure done that requires the infusion of a significant amount of a liquid, e.g., a dye of some sort, in too short period of time to allow for the use of a 22 gauge i.v., I first schedule a visit to the hospital’s PICC clinic and return when I’m done to have it removed. As of a few years ago, of over 4,000 patients who had participated in a coronary CT angiogram study at Cedars-Sinai Medical Center in Los Angeles, I was the only one who couldn’t tolerate a 20 gauge i.v. The lines went into me with enough effort, but as soon as I raised my arms behind me (the preferred position for the scanner) two separate i.v.’s - one in either arm for the sake of redundancy - immediately kinked in 90 degree angles. The joys of RSD/CRPS . . . Finally, your wife’s fear of the stigma of ECT among her family and friends reflects on a remarkable lack of sophistication in Southern California, specifically when it comes to the treatment of psychiatric conditions, and more broadly – beyond the Westside of LA, West Hollywood, etc. – there is a tremendous ethos of conformity, notwithstanding whatever “laid-back” view the rest of the world may have of us. I feel for both of you. Thank you for being so forthright in your reply. This is clearly not easy stuff. I can only hope the tDCS becomes an easier sell. Mike
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I have learned that to be with those I like is enough. - Walt Whitman |
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#4 | ||
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Ballerina--how is your treatment coming along? |
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#5 | ||
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#6 | ||
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Iguanabill,
Sorry for my short reply earlier today but I had to leave to drive my daughter to the airport. (something I would have been unable to do prior to tDCS.) May I ask what occurred that made things go south. I ask only because on several occasions I felt real miserable after treatment, but when I kept at it I reasoned that my symptoms were probably the result of a bad day, and not the tDCS. The reason I initially pushed on with treatments was because I found no reference in the literature that tDCS increases pain. To answer your question about my treatment I continue to make slow but steady progress. Although the drive to the airport is not long, in the past the vibrations and bumps would have ignited a flare. Although I was very ready to get out of the vehicle upon arrival at the airport and upon arrival home, was very tired and my pain level was increased, I bounced back after a rest. I was able to wear a thin shirt for the duration of the trip which is pretty remarkable given the fact that this time last year I was spending most of the day in one room with a space heater. I am happy to report that the dystonia is still absent from my hand and my hand is no longer turning purple, (although it is still cold and weak) I still have absolutely no full body joint pain. It is too soon to tell with reasonable certainty, but the small area of sensitivity on my left shoulder has improved today. Time will tell if the new tDCS protocol is responsible but my hunch is that it is. I am hoping the change in protocol will address the pain and extreme sensitivity in my neck and right pec area. (my plan is to use the current protocol for at least two weeks.) I am not missing the side effects of the drugs I no longer take. My cat can now get into my lap. He has learned to slowly and gently walk onto my lap rather than jump. My service dog no longer attempts to lick my left hand and arm. Prior to she was constantly trying to lick my limb. I have no swelling of my right limb. Each day I wake up filled with gratitude that I have improved so much. I admit, however, to becoming greedy-I want remission. That is what I am working for now. I hoped with all my heart that your wife would find relief with tDCS. Maybe you could resume after she has taken a break. I wonder what would happen If you resumed treatment during a flare. Perhaps keeping a log her symptoms each day might be helpful. Just a thought. Gentle hugs for your wife from me!!!! P.S. I recently hugged my service dog for the first time! She was as amazed an I was. She rewarded me with profuse tail wagging and doggy groans! Last edited by ballerina; 02-06-2012 at 08:58 PM. |
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#7 | ||
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Since I am a responder to tDCS (which in itself is amazing since nothing else worked) I often wonder how the course of my illness would have been effected had I begun tDCS treatments immediately upon diagnosis. So far the clinical trials take patients with a duration of at least 18 months or patients who have more advanced symptoms or who have had CRPS for years.
If anyone is out there whose diagnosis is within three months of initial trauma please consider tDCS as a part of your aggressive treatment plan. tDCS addresses cortical reorganization which is the root cause of the illness. Had I known what I know now I would have engaged in aggressive physical therapy, taken no narcotics, used my TENS unit, taken Trazadone for sleep and treated with tDCS. Hope this helps someone! |
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#8 | |||
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Senior Member
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Sorry. Just saw this and the subsequent posts. Sorry to hear it's been so rough. Mike
__________________
I have learned that to be with those I like is enough. - Walt Whitman |
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