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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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Old 01-02-2018, 02:03 PM   #61
catra121
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Saw my PVP today. He thinks the incision is infected...or at least the skin around it definitely is. He's not sure if the rash on my legs is related or not, but he gave me antibiotics and a prescription strength hydrocortisone cream. He seemed most concerned with the red bumps on my back around the incision because those are bigger and "angrier looking" than the bumps and welts on my legs. Can't tell if any of it is helping yet but am glad I went. Haven't heard back from my pain Dr yet.
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Old 01-02-2018, 06:46 PM   #62
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Saw my PVP today. He thinks the incision is infected...or at least the skin around it definitely is. He's not sure if the rash on my legs is related or not, but he gave me antibiotics and a prescription strength hydrocortisone cream. He seemed most concerned with the red bumps on my back around the incision because those are bigger and "angrier looking" than the bumps and welts on my legs. Can't tell if any of it is helping yet but am glad I went. Haven't heard back from my pain Dr yet.
I was worried that it might be infected by your description. If you have the same dr. As I do (which I think you do) I have never had a return call from him with any of my concerns. I know that if I felt it was important I would call the hospital and have them page the pain fellow. That is what my take home instructions said to do as well. Additionally, I would call the St. Jude rep. I have found mine to be very responsive and mine told me that my dr. Wants a daily update from her on all his patients. So your rep could certainly pass the info on to him. Did you have your implant at Rush? I don’t want to alarm you but I would be worried that you have a staph infection.
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Old 01-03-2018, 01:27 PM   #63
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I did have my implant at Rush. I am waiting to hear back from my rep too. I'm actually kind of surprised how little follow up I've had from everyone...but then again everything has been going really well for me so I guess it makes sense. I don't think I got a follow up call from my St. Judes rep after the permanent implant (I did get one from the Surgi Center)...I know I got a couple calls during the trial but not every day like she said it would be (but again...everything was going great so I guess it makes sense that I wouldn't be getting a ton of follow up).

The hydrocortisone doesn't seem to be helping much at all with the itching. I am at the point of almost scratching myself bloody...and you can imagine the RSD pain I am experiencing because of the itching...but if I don't scratch I am literally losing it. I finally managed to fall asleep last night and woke up less than an hour later scratching and the pain that resulted from that.

I hope it's not a staph infection...that would really stink. They said everything looked good on the 22nd when I went in for my follow up...but all this redness and stuff started after that (after they took off the dressings and put new steri strips on). Hopefully I get an answer soon or the antibiotics that my PCP gave me take care of it.

How are you doing?
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Old 01-03-2018, 03:32 PM   #64
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I did have my implant at Rush. I am waiting to hear back from my rep too. I'm actually kind of surprised how little follow up I've had from everyone...but then again everything has been going really well for me so I guess it makes sense. I don't think I got a follow up call from my St. Judes rep after the permanent implant (I did get one from the Surgi Center)...I know I got a couple calls during the trial but not every day like she said it would be (but again...everything was going great so I guess it makes sense that I wouldn't be getting a ton of follow up).

The hydrocortisone doesn't seem to be helping much at all with the itching. I am at the point of almost scratching myself bloody...and you can imagine the RSD pain I am experiencing because of the itching...but if I don't scratch I am literally losing it. I finally managed to fall asleep last night and woke up less than an hour later scratching and the pain that resulted from that.

I hope it's not a staph infection...that would really stink. They said everything looked good on the 22nd when I went in for my follow up...but all this redness and stuff started after that (after they took off the dressings and put new steri strips on). Hopefully I get an answer soon or the antibiotics that my PCP gave me take care of it.

How are you doing?
I wish I could say I was doing great but I can't. My trial went so well and my hope was off the charts that the permanent device would be as successful but that's not the case.

I am itchy too - still have all my original dressings on so at least that prevents me from trying to scratch the wounds themselves. Two of my 3 leads were not giving any pain or sensation relief at their highest settings. I am going to Rush tomorrow (Thurs.) to meet with the St. Jude's rep to try to figure out what's going one. And now my remaining lead has completely shut down.

So I am somewhat depressed. My equipment isn't working and consequently all of my pain has returned.

I hurried to have the surgery before the end of the year b/c my out-of-pocket costs with insurance had been met. I am worried I will need to have this all re-done.

I came down with a nasty cough after surgery and I am worried that my extreme coughing may have dislodged something.

2018 has to be better.
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Old 01-03-2018, 03:39 PM   #65
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I did have my implant at Rush. I am waiting to hear back from my rep too. I'm actually kind of surprised how little follow up I've had from everyone...but then again everything has been going really well for me so I guess it makes sense. I don't think I got a follow up call from my St. Judes rep after the permanent implant (I did get one from the Surgi Center)...I know I got a couple calls during the trial but not every day like she said it would be (but again...everything was going great so I guess it makes sense that I wouldn't be getting a ton of follow up).

The hydrocortisone doesn't seem to be helping much at all with the itching. I am at the point of almost scratching myself bloody...and you can imagine the RSD pain I am experiencing because of the itching...but if I don't scratch I am literally losing it. I finally managed to fall asleep last night and woke up less than an hour later scratching and the pain that resulted from that.

I hope it's not a staph infection...that would really stink. They said everything looked good on the 22nd when I went in for my follow up...but all this redness and stuff started after that (after they took off the dressings and put new steri strips on). Hopefully I get an answer soon or the antibiotics that my PCP gave me take care of it.

How are you doing?
My follow-up experience has been like yours. The only call I received after my permanent implant was from the surgicenter. What I have found is that texting the reps has worked pretty well. During my trial surgery, I noticed her texting so I figured texting would allow her to respond quicker just in case she was in surgery since she can' t really talk during the surgery.

I am worried about you with a possible infection. I really think some one who was involved in the procedure needs to respond to you. Keep pushing them.
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Old 01-03-2018, 06:21 PM   #66
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Originally Posted by catra121 View Post
I did have my implant at Rush. I am waiting to hear back from my rep too. I'm actually kind of surprised how little follow up I've had from everyone...but then again everything has been going really well for me so I guess it makes sense. I don't think I got a follow up call from my St. Judes rep after the permanent implant (I did get one from the Surgi Center)...I know I got a couple calls during the trial but not every day like she said it would be (but again...everything was going great so I guess it makes sense that I wouldn't be getting a ton of follow up).

The hydrocortisone doesn't seem to be helping much at all with the itching. I am at the point of almost scratching myself bloody...and you can imagine the RSD pain I am experiencing because of the itching...but if I don't scratch I am literally losing it. I finally managed to fall asleep last night and woke up less than an hour later scratching and the pain that resulted from that.

I hope it's not a staph infection...that would really stink. They said everything looked good on the 22nd when I went in for my follow up...but all this redness and stuff started after that (after they took off the dressings and put new steri strips on). Hopefully I get an answer soon or the antibiotics that my PCP gave me take care of it.

How are you doing?
Yes, itching will drive you crazy ! A few things that we've used in the past:

– Basil: This popular herb contains a substance called eugenol, which numbs the nerve endings that cause itching. Place a tablespoon of dried basil leaves in 16 ounces of boiling water, keeping the pan covered. Allow it to cool before applying to itchy skin. Reserve the rest in a mason jar to use later.

– Thyme: Like basil and mint, thyme also has anti-inflammatory properties, and is also a numbing agent. Place a tablespoon of dried thyme leaves in a 16 ounces of boiling water. Allow it to cool before applying to itchy skin. Reserve the rest in a mason jar to use later.

We apply these with a cotton ball.

Natural Itch Relief - Farmers' Almanac

I REALLY hope you find some relief soon !
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Old 01-04-2018, 03:24 AM   #67
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I wish I could say I was doing great but I can't. My trial went so well and my hope was off the charts that the permanent device would be as successful but that's not the case.

I am itchy too - still have all my original dressings on so at least that prevents me from trying to scratch the wounds themselves. Two of my 3 leads were not giving any pain or sensation relief at their highest settings. I am going to Rush tomorrow (Thurs.) to meet with the St. Jude's rep to try to figure out what's going one. And now my remaining lead has completely shut down.

So I am somewhat depressed. My equipment isn't working and consequently all of my pain has returned.

I hurried to have the surgery before the end of the year b/c my out-of-pocket costs with insurance had been met. I am worried I will need to have this all re-done.

I came down with a nasty cough after surgery and I am worried that my extreme coughing may have dislodged something.

2018 has to be better.
I am so sorry to hear this. I hope it's something they can resolve easily. Will be praying for you that they are able to figure it out tomorrow. I have been so worried about messing up my leads but in my opinion there are just so many things out of your control. Even the way I had a hard time sitting or laying down because of the back pain i was so worried that would cause problems.

The pain clinic finally did follow up after the st judes rep talked to them. I had to email pictures and then one of the fellows called me back. He said it might be an allergic reaction to the tape but that it also could be an infection. They called in more antibiotics and want me to increase the dose from 2x per day for 7 days to 3x per day for 10 days. He said better safe than sorry so better to treat with antibiotics just to make sure. Said to take more pics and call back if it gets any worse.
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Old 01-05-2018, 10:33 AM   #68
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Well things seem to be getting better with the antibiotics. Other than flare up pain from all the scratching...the treatment is still working great for me. If I didn't have the DRG I would probably have been bed ridden with the pain from scratching. Instead my pain is a 6-7 right now...elevated but bearable.
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Old 01-05-2018, 12:13 PM   #69
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My incisions didn't get infected but did itch terribly and this really did help: Amazon.com: Anti-Chafing Sports Salve, all natural anti-fungal, best remedy for chafing, rash, and skin fungus: Health & Personal Care

BTW, I'm not sure you use them, but 4% Lidocaine Patches are available over the counter by Salonpas and Aspercreme for less than $2 a patch. Insurance companies seem to be regularly refusing even generic 5% patches and out of pocket from Costco they're $150 for a box of 30.
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Old 01-05-2018, 03:38 PM   #70
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My incisions didn't get infected but did itch terribly and this really did help: Amazon.com: Anti-Chafing Sports Salve, all natural anti-fungal, best remedy for chafing, rash, and skin fungus: Health & Personal Care

BTW, I'm not sure you use them, but 4% Lidocaine Patches are available over the counter by Salonpas and Aspercreme for less than $2 a patch. Insurance companies seem to be regularly refusing even generic 5% patches and out of pocket from Costco they're $150 for a box of 30.
I do use Lidocaine patches. So far I haven't had any issues with getting them approved by insurance and my last ones had a $0 copay. The itching I expected with my incisions...but not the red bumps and welts that surrounded the incisions and THAT was what was driving me totally batty. Like...there was itching prior to the removal of the bandages and replacement of the steristrips and that seemed like normal healing itchiness. But then I developed the red bumps and welts surrounding the incision and about 6 inches around it about a week after the bandage removal. That has improved since I started taking the antibiotics.

The itchiness on my legs and those bumps and welts are still pretty bad though...so maybe that is just from dryness and is unrelated to what was happening on my back. I will look into that salve though for sure. Thanks.
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