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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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09-20-2007, 07:35 AM | #11 | |||
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I understand what everyone is saying. I just wanted to toss my 2 cents in. I can live with pain. what I can't live with is the quality of life. Yesterday was my birthday, and I drove it home even more, that this isn't a trial run of life. this is it. I don't want to have to stop doing the things that make my life worth living. If something I'm going to try (scs) makes things worts, than that is a chance I'll take. If I thought Ketamine would work for me, I would probably try it. It can't kill more brain cells than all the meds I'm on. Of course, I would want the odds in my favor. I wish there was a magic pill that we could all take that would make us all better. As there isn't, I can only hope that each one of us can keep our humor going, our minds working, and our bodies in as little pain as we can. I hope this doesn't sound depressing, because i don't mean it to. it's really just the way I'm seeing things this morning. Of course, it could all change tonight. LOL.
Mary |
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09-20-2007, 09:55 AM | #12 | |||
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Quote:
And for you MR. Allen!!! Ya got me good with that little "bug" running all over the place!! I was trying to shoo it away, when it didn't go away, I smacked the darn thing and knocked over my little stuffed mouse that was sitting on top of my monitor! LOL ~Love, Desi
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I Will Always Believe in Poems, Prayers And Promises Love, Desi . |
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09-20-2007, 02:25 PM | #13 | ||
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"I will keep more of my opinions to myself from now on. Love, Roz"
Roz you have just as much right to post as any one else here does! There is no reason to feel that you should keep your opinions to yourself. Best regards, EJ |
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09-20-2007, 03:15 PM | #14 | |||
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"DITTO"!!!!all ya want sweetie! Love ya!~Desi
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I Will Always Believe in Poems, Prayers And Promises Love, Desi . |
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09-22-2007, 07:12 AM | #15 | ||
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Ketamine has confused me too, and I've had four infusions! But the four different infusions explain WHY it's still a mystery to me!
Here are my experiences (for those that don't know it) with the 7 day low dose ketamine infusions- First infusion- 30 days pain free (Dec 04) Second infusion- 10 MONTHS pain free (Mar 05) Third infusion- absolutely nothing, not even while in hospital with the drip still running (June 06) Fourth infusion- pain levels dropped from 8-9/10s to 1-6/10s for approx two-three weeks (June 07) Not only does it work differently for everyone, it seems to work differently each time! Well, in my experience anyway. But I'm still glad I've had the option to try this. I think everyone should at least have the option, even if they don't feel its right for them. x Kate
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RSD in right arm for 13 years, right leg for 8 years, left arm since May 2013, with full body symptoms and CNS. |
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09-24-2007, 02:24 AM | #16 | |||
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"The neurocognitive effects of 5 day anesthetic ketamine for the treatment of refractory complex regional pain syndrome," Sandra P. Koffler, Benjamin M. Hampstead, Farzin Irani, Jennifer Tinker, Ralph-Thomas Kiefer, Peter Rohr, Robert J. Schwartzman, Archives of Clinical Neuropsychology 22 (2007) 719–729.
Here's the abstract: BACKGROUND: Complex regional pain syndrome I (CRPS) is characterized by severe neuropathic pain that exceeds the severity of an injury and is refractory to traditional treatments. Recent experimental interventions include ketamine infusion therapy.But the article is really a lot more interesting than the abstract suggests. See, e.g.: From an emotional standpoint, the lack of improvement in depression and anxiety (both typically mild–moderate at both time points) was somewhat surprising given the marked improvement in pain. This finding, in combination with the stability of the valid group’s MMPI-2 profile, could be interpreted as evidence of long-standing personality traits that increased the susceptibility of our patients to develop CRPS I. The large “conversion V” evident in these MMPI- 2 profiles is certainly consistent with this interpretation as the severity of the depression and anxiety these patients reported was far below what would be expected based on the amount of physical pain and functional impairment they were reporting. Additionally, the invalid group demonstrated a more pathological MMPI-2 profile as both patients reported more distress as well as more depression and anxiety after treatment. These differences seem unlikely to be related to pain as one of the two patients experienced a dramatic reduction in pain following treatment whereas the other reported only slightly more pain. Thus, it is possible that premorbid psychological factors may increase one’s susceptibility to develop CRPS and these patients may be evidence of this process. [at p. 726.]Too bad it's just a little too large to post here; I would however be happy to send a copy to anyone who wants it. Just drop me a PM with your email address. Mike Last edited by fmichael; 09-24-2007 at 02:49 AM. |
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09-26-2007, 06:44 PM | #17 | ||
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Hi everyone,
I note from Taylas' post quite curiously that medicine is finally catching up to advanced veterinary practices. It was not that long ago that they realised that most small animals were being operated on in a state of complete chemically induced paralysis - NOT UNCONSCIOUS. They just couldn't show a response in any way. I too, will not say too much presently except hugs to Roz and the rest of you. Auberon |
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09-26-2007, 11:59 PM | #18 | ||
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i have had a couple of very odd ketamine responses. first i was given the nasal inhaler thing, it didnt work at all using the suggested dosing so the doc doubled it again no noticible improvement. we eventually gave up. about a year and a half ago i went for 3 and a half months not sleeping. ok illl answer those questions really quickly 1 went for a month not sleeping at all two weeks into the second month they put me in a conscious sedation room and gave me the medication they used to give to kids when they wouldnt sleep, some syruppy disgusting liquid they put in apple juice to make it supposedly taste better. they would put me to sleep under sedatiom for 4 or 5 hours then they would wake me up and send me home. I continued not to sleep and since it had been such a long time and such a random problem so they had me do that whole sleep study thing 3 nights in a row. they said it is the first time they were aware of that happening, apparently most people with sleeping issues who feel like they go for weeks or months without sleep actually sleep. those patients who were hooked up showed evidence that from time to time throughout their sleep their rhythms showed that it was a quick interuption. all of their real sleep occurred during the rem stage and that was when the problem patients had interuptions in a pattern. in my case none of that happened i hung out all night counting the tiles in the ceilings or the pings on the different pieces of equipment attached to me.
anyway back to the point my doctor did the whole conscious sedation thing once a meek sometimes they did it with the gross kids juice annd sometimes they would use versed and fentenol. Whatever they used I slept for about 4 to 6 years. while i was going to the assissted sleep thing I was still taking the nasal inhailer with the double dose ketamine. At some point they finally gave up and did another conscious sedation procedure but I was taken to a different room. initially the ketamine helped me sleep and in turn that allowed me to sleep but it only lasted for about a week. My last experience with ketamine was when i had my second scs for post pain success they provided a constant bulas into my body and a button i could touch if it hurt to much, The ketamine made me sleepy and comfortable for about a day. when i talked the doc he decided uping the dose would be fine. (i did notice they brought a crash cart into my room, the nurse visits increased, and 3 or 4 doctors always sat at the nursing sation pretending like there was suddenly 10-20 new patients that had arrived on the floor and were magically living in my room discribed a pole that holds lines making the immpression that they were some kind of a tree. I think they were just messing with their comotosed patient (they told me when i woke up about the antics of the night sift guys. knowing how board they get most of the time i was glad to bring a smile to their face. The sleeping stuff was totally controlled with ketamine (if those random swings of memories mixed with happy geens) and negative nightmares) but wonce i started to wake up a bit my pain was so far over the 10 of the pain scale. It was more like the age of drinking in the country). I was in complete shock when i woke up with the extra tubes associated with the ketamine in my body and every in of my flesh wishing they would find a better way for patient and doctor's to know when something changed and pnce they had that they should have a way to communicate between those involved quickly. I would say to patience who can afford it and feel like it is the only thing left to do give it a try but i would recommend you find all of the information possble. see a doc you thought was exactly the person you want to use. for any state their is a list of doc in good standing and a list of those who have an infraction n their license. join pain group close to where you live, or if you cannot for whatever reason get one in your srrounding area. this will serve 2 purpses 1 at a time .... on the web trust is far easier to achieve. you are there because you need to be but if they have a forum section say some docto trolling. "I am new in town or My old doc decided the fear of loosing his license in the middle of the night and now none of his patients no idea how to determine a good doc from another one who left me with 8 days left in meds and dont know where to go to maintain the current level from a doc. then ask if anyone has any ideas. Thats how i found my great doc.
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rsd following a botched epideral for knee surgery 1993 remission from 99-2003 shoulder dislocation 2003 CRPS Type 2 scs (cervicle 2005) (lumbar 2007) Strong mind Strong body . |
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09-27-2007, 05:19 PM | #19 | ||
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i wasnt saying that you should be drug seeking....patients with chronic pain arent addicts, my point was to post something that would help you to find a doctor who patients in your condition live. i was initially seeing a pain management doc who was so out of his league he actually told me i should probably look for someone with more experience. he was an odd mx he was willing to say i cant handle your case but he had to much pride to give me the name of another one. so i found a local pain group and asked who people were seeing, more than a few named the pain doc i now see and she is great. funny thing is i was also on a pain forum for the city a hundred miles away because that was where i recieved my first scs. i came to the conclusion far to late that just because my doc was one of the few doesnt mean he was aan excellent physician. when i was thinking about getting the second scs i knew i was going to have to find a new doctor for it. i checked the forum and every time the awful doctors name showed up people responded with "ask your current doctor to find you someone else" or "i wouldnt trust this guy as far as i could through him while on the crutches im still on because of him."
anyway i know pain patients get the pain seeker label far to often i was just trying to suggest that when you are looking for a doctor for a procedure checking out a local forum is probably a good way to find the good or the bad. i should probably make myself a rule to stay off line after i take my night time meds
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rsd following a botched epideral for knee surgery 1993 remission from 99-2003 shoulder dislocation 2003 CRPS Type 2 scs (cervicle 2005) (lumbar 2007) Strong mind Strong body . |
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09-28-2007, 02:37 AM | #20 | ||
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Hi wakegirl,
I have never heard about Ketamine given via nasal prongs--it sounds interesting. I'd love to know how they vaporised it, if you have any information can you let me know please. Thanks very much Tayla |
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