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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 11-11-2017, 03:59 PM   #11
catra121
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Just popping in for a small flare up update. My leg is back down to a 3/10. My arms are still at about a 9...so down a little from yesterday but worse than normal. Still have the flu or whatever stomach bug this is...not fun...but this was a 48 hour bug for my daughter so hopefully I'm at the tail end of it...though my immune system sucks so I'm not holding my breath on that one.
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Old 11-14-2017, 09:36 AM   #12
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catra,

Thinking about you and hoping that the flu is gone. Appreciated all the updates and info you have given about your experience with the trial. Hoping and praying that this procedure will be an answer for pain relief for you.

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Old 11-14-2017, 11:51 AM   #13
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Thanks. I'm still having some stomach issues...thinking now they may be caused by the antibiotics. Without getting too graphic...i had several things going on and it seems like the flu portion is gone now but probably having some side effects from the antibiotics. Thankfully I only have one more day of those and then maybe I can eat normally again. Really looking forward to a nice warm bath tomorrow afternoon though. I have already decided I need to make two trips to get a shampoo at the salon a week after my permanent implant and am getting a seat I can put in the tub for easier sponge baths. I'm also considering a grabber. Husband has been joking about getting me one for years because I am short...so I am resistant to the idea...but I do think it would be helpful with the no reaching and bending stuff. If anyone has any other tips to make recovery easier...im all ears. Glad they do the trial and that I got to keep it for a week and a half instead of them taking it out after just 2 days because I feel like I will be better prepared for the recovery from the permanent implant. I know that will be different in some ways because it's more invasive...but just being able to anticipate some things and plan better a little makes me feel better and less nervous.
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Old 11-14-2017, 10:06 PM   #14
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I was really dependent on my grabber while recovering from surgery. I tried a few brands and liked this Unger style the best: Unger Grabber Plus & Reviews | Wayfair
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Old 11-14-2017, 11:42 PM   #15
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I was really dependent on my grabber while recovering from surgery. I tried a few brands and liked this Unger style the best: Unger Grabber Plus & Reviews | Wayfair
Thank you for the suggestion! I will definitely add this to my list.
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Old 11-14-2017, 11:47 PM   #16
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Well...my trial ended a day early (sort of). For some reason the stimulator just turned off. I noticed because my pain levels slowly went up throughout the morning and when I went to connect it to the controller to try to turn it up...it wouldn't connect and then gave a message that the stimulator was off. Best guess is that last night with all my tossing and turning that I pulled something loose and it shut down. I called my rep and since the leads are coming out tomorrow anyway we decided to just leave it off. I AM relieved that the pain is gradually increasing...I was worried it was going to be like BAM there's that level 8 pain again and I wouldn't be able to handle it. It's been slowly increasing all day and is up to about a 7 now...almost at the previous baseline...but it's taken all day to get there and unlike a flare up where the increase is instant...this was easier to tolerate. I'm sad the trial and relief are ending...and that it will be 4 weeks until the permanent unit goes in...but I'm REALLY looking forward to not having the wires and stuff on my back and to taking a nice, warm bath. <3
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Old 11-16-2017, 12:29 PM   #17
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My appointment yesterday to get the leads removed from the trial went pretty well. They were running WAY behind...doctor didn't come into the room until 2 hours after my scheduled appointment time (this wasn't my regular doctor but the doctor that was just there that day since it's not my doctor's normal day but the leads had to come out). I did jump off about 6 inches off the table when they pulled one of the leads due to a shock in the back of my left thigh...that was weird and I felt a sort of buzzing sensation for a few hours after but it seems gone now. Pulling the tape off...awful.

One unexpected thing...I have a burn where the one cord was and where the rectangular unit was taped to my back (not where the tape was...but where these things were touching my skin). They said they are friction burns...so not from heat off the unit but more from the rubbing against my skin for 10 days. So those spots are a extra tender today but not too bad. The doctor didn't seem at all surprised or concerned so I am guessing this is normal...but I was surprised.

The rep from St. Jude's went over a few more details about the permanent implant including that I will be getting a non-rechargeable unit...which I am happy about because I am so sensitive to the touch that I was worried about how I would do with a rechargeable unit because I know some people have issues with sensitivity due to the charging. The unit will be placed on the right side of my back.

Very excited...less than 4 weeks until my surgery and...hopefully...a treatment that provides me with consistent GOOD relief!
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Old 11-16-2017, 06:54 PM   #18
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Quote:
Originally Posted by catra121 View Post
My appointment yesterday to get the leads removed from the trial went pretty well. They were running WAY behind...doctor didn't come into the room until 2 hours after my scheduled appointment time (this wasn't my regular doctor but the doctor that was just there that day since it's not my doctor's normal day but the leads had to come out). I did jump off about 6 inches off the table when they pulled one of the leads due to a shock in the back of my left thigh...that was weird and I felt a sort of buzzing sensation for a few hours after but it seems gone now. Pulling the tape off...awful.

One unexpected thing...I have a burn where the one cord was and where the rectangular unit was taped to my back (not where the tape was...but where these things were touching my skin). They said they are friction burns...so not from heat off the unit but more from the rubbing against my skin for 10 days. So those spots are a extra tender today but not too bad. The doctor didn't seem at all surprised or concerned so I am guessing this is normal...but I was surprised.

The rep from St. Jude's went over a few more details about the permanent implant including that I will be getting a non-rechargeable unit...which I am happy about because I am so sensitive to the touch that I was worried about how I would do with a rechargeable unit because I know some people have issues with sensitivity due to the charging. The unit will be placed on the right side of my back.

Very excited...less than 4 weeks until my surgery and...hopefully...a treatment that provides me with consistent GOOD relief!
Catra, great that your trial went well. A non- rechargeable unit sounds preferable as recharging is a nuisance and I was always worried about forgetting to recharge and damaging the battery. I had a scs medtronic unit for 8 yrs. I had it taken out because eventually my brain had adapted and I wasn't getting the benefit any more. They did offer me a trial of a high frequency unit (different brain input) but I had major issues with battery placement. So they are putting the battery in your back? I'm assuming that's you're upper buttock. I had mine there, partly in case I had a 2nd child and also because I am small and I was advised it is easier for sitting in short people so it doesn't hit the ribs. With me it did eventually cause some pain/pressure care issues with battery migration/not enough fat covering it but batteries are a bit smaller now.There are pros and cons wherever you put the battery. I can't believe they took the leads out with you awake especially as you have CRPS! You should be at least given that medication where you can't remember anything later, is it conscious sedation or twilight sedation, relaxant- something!

Good luck with the next stage, Booklover
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Old 11-17-2017, 05:39 PM   #19
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I had sedation when they put the leads in but not when they came out...it was just sit on the bed in the room and they pulled them out. That one shock and then the wiping with alcohol after were the worst bits. Having been through it I actually would be surprised if they gave sedation for that...and I'm someone who has the dentist put me under sedation...lol. Thanks for the support and sharing your experience with me.
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Old 11-28-2017, 05:04 PM   #20
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I had sedation when they put the leads in but not when they came out...it was just sit on the bed in the room and they pulled them out. That one shock and then the wiping with alcohol after were the worst bits. Having been through it I actually would be surprised if they gave sedation for that...and I'm someone who has the dentist put me under sedation...lol. Thanks for the support and sharing your experience with me.
Catra, how are you doing during this period that your stimulator is out and when do you have the permanent one implanted? Thank you for posting your experience. I am in the midst of a drg trial. My pain was slowly creeping up today.
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