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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Old 07-01-2009, 03:41 PM #21
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Originally Posted by Jennelle View Post
Okay forgot to address this....ask for a pca (patient controlled anelgesia) they set up a machine that give continuous narcs and then a boost if you push a button. Also, make sure they give you something for nausea....IN RECOVERY.... such as reglan or zofran. Pain control will be huge... let them know which narcs work best for you or the doc will just give you whatever they want....PLUS ASK BEFORE THE SURGERY WHEN YOU MEET THE SURGEON! Toradol is a wonder drug and can be given along with narcs safely (like IV ibuprofen but better) but if you have bleeding problems not a good choice. Vistaril is great for nausea for your hospital stay plus it makes your narcs work better....hence better pain control.
Hope this helps
Jennelle
thank you for all the advice, i've known for a few years that this surgey would end up happening. my peds gi, the gi "graduated" to, and the gi at stanford that i now see all agree it would have happened eventually. I'll be at stanford hospital where i used to be seen at the pain clinic, so my surgeon is going to speak with them as well. i have already informed my surgeon i have a high tolerance to drugs, and will remind him at my pre- op appt next week. I have spent a lot of time in hospitals since i was about a year old, so i am very familiar with most drugs and how they work for me, along with how to deal with doctors and the staff. whether or not they like it i will make my point across haha. i am very firm about what works and what doesn't. my doctors are very caring and understanding, and they know how much i have been through and they all trust my judgement. as far as my liver goes, i have been told since i was put on the list when i was just about 10 that eventually i will need a transplant, been told by stanford, my gi's and ucsf. not that by any means i want to have it, but for the most part i'm almost rather just get it over with. i know that i can't request to have it done while i'm still young and what not, but i've been prepared for almost 16 years to have it done. i'm more worried about my rsd spreading and coming back than i am going into liver failure and needing a transplant. i'm a bit backwards but what can i say lol..

once again thank you for all your advice!!! i very much appreciate it
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Old 07-01-2009, 03:41 PM #22
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ps Oh, and I think they left the spinal running for a day or so, as well. I was very well looked after! lol
what's a spinal?
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Old 07-11-2009, 10:32 PM #23
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i had all my pre op appts yesterday. and it is very possible that i will be able to get a ketamine infusion during my surgery. so i'm stoked on that. i just have to discuss it with the actual anesethia doc when i meet him before i go in. i made sure to tell them that my left arm is completely off limits. i think i might write DO NOT TOUCH with a sharpie down my arm just in case haha.
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Old 07-11-2009, 11:33 PM #24
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I just wanted to send ya some well wishes and let you know I was thinking about you and your upcoming surgery.

I just had surgery on Monday (my first since the RSD diagnosis) and know know how un nerving it can be. Thankfully my anesthesiologist and surgeon knew at least little about RSD/CRPS and did their best to attempt to make things go as smoothely as possible in terms of placing IV's, etc. The surgery triggered a nasty auto immune flare up (part of my RSD/CRPS), but, on the upside, it didn't trigger too bad of a flare in my abdominal CRPS.

Praying for you !

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Old 07-14-2009, 09:45 AM #25
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I've had CRPS type II for 4 years following venipuncture injury to right arm. It has since spread to the right side of my body. Just before my hysterectomy two years ago, at the suggestion of my surgeon, I did write "no IV right arm" on all the IV sites on my right arm, wrist, & hand. No problems with the surgery.
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Old 07-15-2009, 02:35 AM #26
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I've had CRPS type II for 4 years following venipuncture injury to right arm. It has since spread to the right side of my body. Just before my hysterectomy two years ago, at the suggestion of my surgeon, I did write "no IV right arm" on all the IV sites on my right arm, wrist, & hand. No problems with the surgery.
yaa, i'm thinking a nice fat sharpie, like for a poster board, and from shoulder to hand writing "DO NOT USE"
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Old 07-15-2009, 08:54 AM #27
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I just wanted to send thoughts and hope things begin to look up soon. It sounds like you have been through so much and are a fighter. Many better and healthier wishes
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Old 07-16-2009, 02:12 AM #28
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thank u so much!

they actually have been looking up, i ran into a guy i went to hs with (graduated 2 years ahead of me) on my birthday, and we had an awesome date monday night that ended up lasting till 2 am. and we're going out again tomorrow, and he knows about the surgery coming up and it didn't make him stand offish at all like to keep gettin to know me and hanging out. which i thought it might since i'll be recouping for so long. but nope, he's sticking around! super cute too btw haha!
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