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 09-24-2017, 10:50 PM #11
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Thank you for the update Lit Love. So glad the cancer was isolated and that you don't need chemo. Praying you will heal soon. Sending many virtual hugs your way. Get plenty of rest and take good care of yourself!
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Old 09-26-2017, 11:59 AM #12
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There was apparently a miscommunication and the final pathology reports weren't finished. I will need chemo after all. I'll update Thursday after my appointment.
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Old 09-28-2017, 11:04 AM #13
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I'm so sorry you have to get Chemo Lit Love. Praying that it helps though and that you start to feel better soon.
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Old 09-29-2017, 05:16 AM #14
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Lit,
My dad at 72 had both chemo and radiation when he was diagnosed with colon cancer. He lived cancer free until he died in his late 80's.

I won't give "you need or you should" messages, because I think there is no message for this. I vividly recall the numbness I felt when I was told that I needed brain surgery.

I know the fear and the worry you have about average medical procedures. I am insane with anxiety before my brain angiograms. My most recent one was last week. I have been in CRPS related pain ever since.

I find it helps me feel in control if I request accomodations like pediatric needles and I remind everyone that I have CRPS. I think the next time I will bring a decorated "fall risk and CRPS" sign with me.
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Old 10-04-2017, 10:34 PM #15
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Sorry I haven't posted. I had a really rough few days. My surgical oncologist was surprised that his staff member claimed I needed chemo and apparently it was a mistake. So, I'm very, very relieved.

I had a weird/dangerous appointment with my pain doc and I think I need to switch docs.

Thanks, again!
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Old 10-05-2017, 04:09 PM #16
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Happy to hear you don't need the chemo after all. Been thinking of you. Sorry to hear you may need to change docs...that's never a fun process to go through but we all know how important it is to try to find the right Dr. Hugs.
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Old 10-06-2017, 02:40 AM #17
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My doc does blocks in his office without a general and uses a machine to find the nerves in your neck for the injection. It's very similar to a satellite ganglion block. I repeatedly said I didn't want one done that day but he wouldn't listen to me. The machine malfunctioned so he said he couldn't do it, so I repeated it was fine I didn't want to do it anyway. He then says I'm going to do it anyway and immediately put the needle in my throat. Without the machine he couldn't get the response he wanted and kept trying and trying. I started crying from pain and literally feeling violated. The past 6 months he is suddenly not remembering anything. I planned on sticking with him until he retired, but now I think I have to switch. He also prescribed me Clonidine patches that day knowing I was unsteady, my blood pressure is low from the meds I'm on and that I was expecting to start chemo. Why the urgency that day??? As he walked out he said I'll you next week, and I raised my voice, why? He wanted me back for another block. The blocks have stopped working on that limb anyway. They still work on my jaw on that side, or my other limb when it flares. He didn't even get approval from WC.

All that and the block did nothing. I went from there to my surgical oncologist, fully expecting the worst news possible. I had a appointment for the following Monday and the scheduling nurse insisted I move it to Thursday because I urgently needed to start chemo... SMDH.

Anyway, that's the full rant. My pathology report was good. I was staged IA. The only thing concerning is that it said I had (have?) rare, reactive mesothelial cells.
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