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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)

DRG Treatment

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Old 01-06-2018, 02:46 PM   #71
catra121
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Fell asleep on the couch this morning and was awakened by a 3 year old climbing on my back. OUCH! Hurting quite a bit now but thankfully it doesn't seem to have affected the treatment. Good job watching the kid this morning daddy. He of course demands to know why I am tired...sigh...
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Old 01-07-2018, 11:06 PM   #72
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For the itching I would recommend making a paste of baking soda and applying that to the area. OR good old Calamine lotion. If you can get your hands on it, Benadryl makes a topical ointment. It helps a lot!
This really sounds like an infection and possibly an alllergic reaction as well to something (welts sound like hives? and spreading down away from the site is more than just contact dermatitis from tape). Have you tried just taking some Benadryl or Zyrtec to help with the itching? My boys get hives sometimes, just randomly, and Zyrtec can really help that constant itch. Also aquafor on top of whatever cream or ointment you use, my son told me when I put that on it really calmed down the itch.
I'm so sorry you are going thru this, but I'm really glad you saw your doc, cause infections from surgery are nothing to mess with!
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Old 01-08-2018, 09:59 AM   #73
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Quote:
Originally Posted by Becca71 View Post
For the itching I would recommend making a paste of baking soda and applying that to the area. OR good old Calamine lotion. If you can get your hands on it, Benadryl makes a topical ointment. It helps a lot!
This really sounds like an infection and possibly an alllergic reaction as well to something (welts sound like hives? and spreading down away from the site is more than just contact dermatitis from tape). Have you tried just taking some Benadryl or Zyrtec to help with the itching? My boys get hives sometimes, just randomly, and Zyrtec can really help that constant itch. Also aquafor on top of whatever cream or ointment you use, my son told me when I put that on it really calmed down the itch.
I'm so sorry you are going thru this, but I'm really glad you saw your doc, cause infections from surgery are nothing to mess with!
Thanks for the ideas. The antibiotics seem to have made w huge difference in the itching so I feel like it was related to the infection since nothing else has really changed.
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Old 01-11-2018, 11:37 PM   #74
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Saw the dr Wednesday morning and they said everything looked good. They agreed that it was probably either an infection or possibly an allergic reaction to a vindomyacin powder they put in there (never heard of that but I guess it's come up a few times that people have had a reaction to that powder...I'd be skeptical that was it though because 1) I didn't have a reaction until almost 3 weeks after the procedure and 2) the antibiotics cleared it up). They sent me to get some bloodwork to just to make sure all of that looks good.

The doctor wants me to start physical therapy in a week and a half or so (when I'm at 6 weeks post procedure) and then I see my dr again February 21st and we will discuss the possibility of me returned to work (which I am really optimistic about). Obviously I will still have some restrictions because of my arms but will be able to perform my primary job functions once I am able to be mobile and have rebuilt my strength.

I am SO ready to be done with this recovery period...I am just done with it.

Small side note...now that swelling and stuff is gone...I can noticeably feel the battery in my back when I touch there. It's still pretty tender...but that's so weird. This only started the last few days...before then there was still so much swelling I couldn't feel it. It doesn't hurt...it's just weird...and I can't see it or anything just can feel it.
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Old 01-12-2018, 08:46 PM   #75
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Hi Catra121. I missed you at the clinic by a day. I was there on Thurs. My pm is out of town so I saw his associate. Dressings and sutures were removed. My incisions are red and have drainage. The doctor told me to keep them open to air, shower daily with an anti-microbial soap and then pat the incisions with peroxide on a sterile gauze pad. Not to worry me any (haha) but... He told me if I start running a fever, get a headache, or stiff neck to come to the emergency room right away. On the positive side, he thinks the redness is a reaction to the dressing and the drainage is from sweating. (We hope.) But to be on the safe side, I am going back in a week- he said standard was 4 weeks. The St. Jude's rep. increased the limits on my generator so I went up on that foot and it has been better. I am still amazed at what they can do. My second lead just started working somehow. The drg representative I met with has a degree in biomedical engineering. Never met someone with that degree before. I had wondered what sort of education they had.
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Old 01-13-2018, 11:57 AM   #76
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Glad to hear they were able to get your unit working and that it didn't require new surgery...I was worried about that for you. Glad they will keep an eye on your incisions and that you are going back next week. Hopefully it all clears up quickly. One of these days we might cross paths at the clinic finally. Thanks for the update.
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Old 01-13-2018, 08:38 PM   #77
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Hi Catra,

Sorry I am so late to the conversation! I have thought of you often, sent prayers and monitored your progress. I am so glad to read that you are healing and making improvements.

May you continue to make gains and find relief as you get further out from your procedure.

Sending many soft hugs, LP
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Old 01-17-2018, 11:29 PM   #78
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Catra,

How's your recovery going ? I hope you're doing well and that you're pain free.
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Old 01-18-2018, 09:07 AM   #79
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Catra,

How's your recovery going ? I hope you're doing well and that you're pain free.
Thanks. It's going very well actually. The infection seems to be gone. Back pain is down to just being very tender and occasional burning at the incisions themselves. I'm moving around well and building up strength in my legs. I feel very excited to start physical therapy next Monday and take my recovery to the next level. My no lifting, bending, etc restrictions are almost over and I am looking forward to a little more normalcy in terms of being able to take my daughter to daycare and pick her up from daycare. The DRG is still working very well. Just the one small flare up a couple weeks ago and it was still better than my baseline used to be before the DRG. This morning my legs are feeling a little sore from all the laps I've been doing in my dining room...lol...but that's a good soreness as far as I'm concerned. I'm still not sleeping very well because of my upper body pain...but that's just par for the course i guess. Overall I feel like I am doing great.
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Old 01-18-2018, 07:38 PM   #80
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I saw my pm and the stimulator reps yesterday. Just like you experienced, my pm believes my redness and swelling are related to the vancomycin powder that they put into my incisions during surgery. I think you are having better results that I have been having. Hard to find a good setting for the relief. I'm all over the place on the numbers. Yesterday's rep believed that the surgical rep mislabeled my leads and so I was really putting one lead way up to get the pain relief I was needing b/c it was a lead in a different spot. (If that makes sense.) I had to turn my stimulator off yesterday while driving home b/c I felt I was getting shocks from it with every bump I hit. Going back in 2 weeks so hope to get the programming looked at again.
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