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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 01-09-2014, 08:00 PM #11
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Hey finz! Thanks for your reply. Surgey went pretty well (obviously since I am on here right now ).

Regarding the SCS's...I had two (cervical and thoracic) implanted June 2011 and a revision on the thoracic one Nov 2011. They helped me greatly, so much so that I was able to work another year and a half. I was losing the use of my hands. The SCS's helped me with desensitization big time! If I could go back in time, I would do the same thing and get them.

The issues leading up to the removal is that the thoracic paddle lead migrated up and that battery was twisted and hurting. (that battery was moved to my front right side with the revision in Nov 2011) Also, every time I had either one of them on, I would get pain and spasms in my lower back. Reducing the stimulation wasn't effective for me.

Hope this makes sense, just took some more pain meds

Nanc
So happy you are home already and alert enough to be on NT - wishing you a speedy and uneventful recovery!

Hope you rest well,
Tessa
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Old 01-09-2014, 08:33 PM #12
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Nanc I am sorry you are suffering. I didn't know CRPS could spread to the bladder. There are meds used for b,adder spasms. Wonder if that would alleviate any pain? Best wishes for an uneventful removal.
Hi Lottie! Thanks for the well wishes I think RSD/CRPS can spread to anywhere. I do not have RSD in my bladder, I have Interstitial Cystitis..which I read that it can be associated with RSD. Who knows!?! Dr thinks that it is RSD that is spreading to...umm...my lady parts. There are meds that they use specifically for IC, but I cannot take them. They also use a lot of the same meds for IC that they use for RSD and I cannot take any of them. I am gonna inquire about the suppositories that zookester mentioned to me.
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Old 01-09-2014, 09:12 PM #13
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Thank you all for the well wishes. Everything seemed to go pretty well. No laminectomy needed - YAY!!! Doctor said it all came out without issue. I have dissolving stitches so I can shower with the bandages on and then change them after that. Of course I am having surgical pain in all four incisions, but it is nothing compared to the pain I felt from the implant surgery.

Aside from the incision pain, I am already feeling relief where the front/side battery was twisted and hurting...that feels promising

Gonna sign off now, got a bad headache and feeling a little groggy!
Nanc
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Old 01-09-2014, 10:15 PM #14
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Yea Nanc!
Glad surgery went o.k. so far, & really glad you posted to let us know!
I really hope you'll find other pain relief now that SCS's are out.
I will look forward to knowing about your progress.
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Old 01-10-2014, 08:46 AM #15
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Glad everything went well. Rest up and keep us posted on how you are doing.
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Old 01-12-2014, 04:08 PM #16
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Hi Nanc, I'm glad your surgery went well. I hope you feel better soon now that your SCS's are out. My thoughts and prayers are with you.
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Old 01-12-2014, 09:26 PM #17
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Thank you all for the well wishes.

I had a couple of rough days there. The pain was soooo much worse on the 2nd and 3rd days. Today was better, thank goodness. Demerol has been the only pain med I could tolerate (get headaches but can deal with that). Anyway, I took a higher dose as prescribed and had some hallucinations and double vision...very scary for me. So, that is not gonna be taken again! I am now having to tough out the RSD and surgical pain, which sucks.

I really think they were rough on me with the breathing tube. My throat is still raw and have coughed up blood the past couple of mornings. My husband has changed the bandages on all four incisions every day as instructed and that has been hell.

I know this part is temporary and I will get better everyday, I just want to be there now

Thanks for listening...Nanc
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Old 01-12-2014, 10:52 PM #18
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Originally Posted by Nanc View Post
Thank you all for the well wishes.

I had a couple of rough days there. The pain was soooo much worse on the 2nd and 3rd days. Today was better, thank goodness. Demerol has been the only pain med I could tolerate (get headaches but can deal with that). Anyway, I took a higher dose as prescribed and had some hallucinations and double vision...very scary for me. So, that is not gonna be taken again! I am now having to tough out the RSD and surgical pain, which sucks.

I really think they were rough on me with the breathing tube. My throat is still raw and have coughed up blood the past couple of mornings. My husband has changed the bandages on all four incisions every day as instructed and that has been hell.

I know this part is temporary and I will get better everyday, I just want to be there now

Thanks for listening...Nanc
Oh Nanc, I'm so sorry hon. Me too, I wish you were there now. It's coming though... Hang in there girl! I sure wish there was something that would work. Having to tough it out is no good. Can you get a doc on call to get you something else called in? I feel for you... so sorry hon. I hope things ease up soon!
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Old 01-12-2014, 10:56 PM #19
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I wish I could take your pain away Nanc. I remember when I had my endo surgeries in 2012. They gave me demoral because the morphine didn't help with the pain. The demoral helped, but I got hullucinations too. It was really scary. I remember not being able to talk for the first day because of the tube they put down my throat. That really hurts afterwards when you wake up. I ate lots of ice cream. That seemed to help. But I had it in milkshake form and only vanilla. I hope you heal quickly and the pain subside soon so that you feel better. I will pray that you feel better soon. Take care.
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Old 01-12-2014, 11:42 PM #20
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Hi Nanc, Glad the Doc was able to get this done for you. Now, we gotta get you through this post op time. Demerol is a difficult drug for many people, get switched to something else. Don't let the productive cough go on without a doc examining your throat. Hoping this is behind you soon. Let us know how you are doing. Best ~Lottie
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1999 Chronic spine pain related to Degenerative Disc
Disease,
Sept 2001. C6 / C7 discectomy & fusion.
Jan. 2005 L5/S1 discectomy and Artificial Disc Replacement.
July 2011 removal of broken
.
Artificial Disc Replacement.
Woke up in recovery room with RSD Monster.:
.

Aug 2011 Stabilization of spine at L3/L4/L5.
October 2014 Rheumatoid Arthritis.
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