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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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I have to have a pretty big surgery on July 17, an ileostomy- where they remove part of my small intestine that is bad and reconnect it to my side and i'll have to wear a bag (pretty gross and so not looking forward to it). I have also had cirrohsis of the liver since i was a little over a year old so this kinda complicates things, as well as having a colectomy when i was nine (full removal of my large intestine). Because of my liver i have developed varacies (areas in my spline and esophogus that are problimatic for serious bleeding), I haven't had any problems with these since i had the colectomy at which point the ones in my esophogus burst and i threw up a pint of blood (EW). so i saw a heptologist so i could get an ok for the surgery and he gave me a 25% chance of going into liver failure and mortality rate. but oddly enough that doesn't really bother me as much as the possibility of having the surgery and possibly having the rsd spread to my abdomen/internally.
any body have any suggestions of preventative drugs/injections i should ask for while in the hospital? i have a pre anesthesia appt in about 2 weeks and i'm going to ask to get ketamine as part of what they use to knock me out. figure i might as well try to get a k infusion that's gonna be covered by insurance while i can. since its put me in remission i don't see why it wouldn't prevent me from spreading... but if the anethesia doc doesn't go for that i'm very open to other suggestions.
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~*Andrea*~ |
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#2 | ||
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Senior Member
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lHi Andrea,
I'm sorry you are going to have to go thru another procedure. It's good you are starting to research your options now, having time on your side. It would be wonderful if you can have ketamine, since you have already experienced success with it. Just one suggestion, could you call your anesthesiologist and ask for earlier appointment, cancellation? That way you would have more time in case he doesn't or isn't willing to use ketamine in his coctail. There is a good website by Dr. Hooshmand in Florida that is now retired. www.rsdrx.com Another Dr. took over his practice I believe. I'm going to research that site for pre-surgery drugs. The RSDSA organization takes phone calls. I went to their annual meeting here in Scottsdale, AZ 135 attended the patients day and The next day was for Drs. But if you look up RSDSA, they have a phone number where they take calls. If I find something, I'll PM you. I just remembered, someone on this forum had their Dr.. call Dr. Schwartzman in Philly and he was more than happy to share what they use before surgery. Hope the best for you. Let's keep in touch, so we can know you get the information you need before surgery. Take care, loretta |
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#3 | ||
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loretta
talk with your anathesa guy and dr about a continous block after surgery. im due for surgery in 4 weeks to for a THR revison ,ive got to talk to my surgeon in about it too, Remember that God is with you and our prayers are going up with you too. pm me when you want to and keep us posted bobber |
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#4 | |||
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Andrea, I will keep you in my thoughts and meditation prayers. I feel so bad for you having to endure another procedure. I am here for you
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. A Positive Attitude Will Assist Me Toward An Active Life, Once Again . WC Injury 03/24/07;Two Right Knee Surgeries on 5/22/07 and 01/16/08. Surgeons and Physical Therapists ignored my concerns of burning pain, swelling, and no improvement and getting worse. Diagnosed RSD/CRPS I/Sympathetically Mediated Pain Syndrome/Chronic Pain on 06/2008 by family doc;on 08/2008 and 12/2008 diagnosis confirmed by two WC PM Doctors: Both legs;hips; hands; and spine effected by this culprit. SSDI granted 01/2009. |
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#5 | |||
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thanks you guys for ur support and suggestions. i don't think i can change my appt with anethesia tho, since they're kinda rushing the date for surgery so i can be done with recovery by the time school starts (i'll be in the hospital for a week then recovery time is 4-6 weeks) at the end of august. so i'm cutting it close!
i do know my surgeon is going to talk to the pain management team and see what they say as well- good thing about being at stanford, having all top departments in every field. what's a continuous block?
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~*Andrea*~ |
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#6 | |||
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Magnate
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I'm sorry to hear you are going through this. It sounds like you have been through too much already.
As far as the Anesteologist, he comes out to talk to you before you go into surgery. Tell him that you have RSD and if there is anything he can do to keep it from flaring or spreading. They haven't failed me yet with any of my surgeries. Good luck on the surgery and let us know how you do. Ada |
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#7 | ||
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Member
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I'm so sorry you have to go through this.
I had surgery several weeks ago on my ankle. I have full body RSD. I live outside of Cinncinatti OH and I went to the best hospital in the area. My anesteologist called Dr. Schwartzman (I use to see him every six months he wants me to go to Germany for his coma treatment). After the surgery they did a ketamine infusion and my RSD didn't flare. I wish you the best of luck and I will be praying for a full recovery. Take care, Sherrie |
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#8 | |||
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Senior Member
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Hey Andrea, man that sounds like a doozy of a surgery!
I dont have any ideas on what to do for the RSD, but you can count on some serious prayers from my house. ![]()
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. Gone Squatchin |
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#9 | ||
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Member
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a continuous block is were after the surgery the anesthesiaiogist contues to pump anestha into the surgery site to keep the rsd from knowing there was trauma done to that area,,they ussually will run it for a few days after surgery,,ive heard from sevearl here who had it done and it worked and the rsd didnt spread,,,im due for surgery in 5 weeks,,im going to try to have it done as awell,,,,,,,,,,,,,
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#10 | ||
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In Remembrance
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I agree with Allen!
Lots of Prayers from me, too! Keep the Faith! Pete |
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