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 11-22-2013, 08:20 PM #1
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Default Decision made on my SCS...

Hi guys! So I saw a new neurosurgeon today and we have all decided that the best thing is to remove my two spinal cord stimulators. Surgery is not scheduled yet, but I am shooting for sometime after Christmas.

I am having a bladder procedure this Monday...so much going on...
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Old 11-22-2013, 09:28 PM #2
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This has to be a difficult decision, I know the implantation was a pretty big ordeal. How long have you had the SCS's.

I guess as long as you've been on this forum, you must know thehuge amount of prevention and precaution you have to take before any surgery? I've read some of the bladder issues you've had and it sounds very necessary.
If you don't have it already, I'm sure Kevscar will be sending you hospital/surgical protocols. I got them as a reminder and it helped!
Please keep us posted on how it all goes.
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Old 11-22-2013, 10:34 PM #3
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Quote:
Originally Posted by AZ-Di View Post
This has to be a difficult decision, I know the implantation was a pretty big ordeal. How long have you had the SCS's.

I guess as long as you've been on this forum, you must know thehuge amount of prevention and precaution you have to take before any surgery? I've read some of the bladder issues you've had and it sounds very necessary.
If you don't have it already, I'm sure Kevscar will be sending you hospital/surgical protocols. I got them as a reminder and it helped!
Please keep us posted on how it all goes.
Thanks! Yeah, definitely a tough decision. I had them implanted in June 2011 and a revision on the thoracic one in November 2011. If I had to do it all over again, I would get them. They helped me so much. They helped me gt through another 1 1/2 years of work...I know I would not have made it through without them. The thoracic lead has migrated again, the battery is twisted, I get back pain/pressure/spasms when they run...the effectiveness has worn off.

I liked the new doctor I saw today and knew I wanted a neurosurgeon to do this. He recommended removal over a revision. I agreed.

I have seen Kevscar's info in the past, I will look for it again. Yes, the procedures are necessary and I will be happy to have them both behind me.
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Old 11-22-2013, 11:35 PM #4
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Quote:
Originally Posted by Nanc View Post
Hi guys! So I saw a new neurosurgeon today and we have all decided that the best thing is to remove my two spinal cord stimulators. Surgery is not scheduled yet, but I am shooting for sometime after Christmas.

I am having a bladder procedure this Monday...so much going on...
oh boy, I hear ya. My head is spinning with how much is going on. Best of luck on Monday Nanc. I hope everything goes real smooth.
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Old 11-23-2013, 09:27 AM #5
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Good luck with everything Nanc . I know you must be really nervous, but sounds like you and the surgeon have made the right choice - if the issues with it are outweighing any benefits, then it's hopefully going to improve things for you overall....

Will be thinking of you

Bram.
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Old 11-23-2013, 11:39 AM #6
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Quote:
Originally Posted by Nanc View Post
Hi guys! So I saw a new neurosurgeon today and we have all decided that the best thing is to remove my two spinal cord stimulators. Surgery is not scheduled yet, but I am shooting for sometime after Christmas.

I am having a bladder procedure this Monday...so much going on...
Best of luck to you on Monday...
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Old 11-23-2013, 07:20 PM #7
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AZ-Di I won't be sending anybody anything anymore or doing anymore posting, I accidently deleted everything 4 years well over 3000hrs of research, all the papers the letters the petitons the graphics gone and due to the lack of people willing to stand up and fight,, US petition only needed 25,000 from 1.9 mill sufferers in 30 days, less than 800 signed. In the UK only 5 or 6 have said they e-mailed their MP's so I'm done
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Old 11-23-2013, 07:58 PM #8
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Can I ask, if you had already been forced to stop working for several years, would it have been worth all you've gone through for the temporary results? TY!
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Old 11-23-2013, 08:23 PM #9
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Can I ask, if you had already been forced to stop working for several years, would it have been worth all you've gone through for the temporary results? TY!
Hey Lit Love. I would do the same thing over again...but maybe just with a different doctor. The SCS's helped me get through my last year and a half of work. The SCS's also helped with desensitizing my hands and increasing the movement in my left shoulder/arm (it was pretty stiff and I had limited movement). So for me, they were beneficial. Now, I have had some other issues with them (another lead migration and battery is twisted) and the effectiveness has worn off. So they need to go.
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Old 11-24-2013, 04:49 AM #10
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Quote:
Originally Posted by Kevscar View Post
AZ-Di I won't be sending anybody anything anymore or doing anymore posting, I accidently deleted everything 4 years well over 3000hrs of research, all the papers the letters the petitons the graphics gone and due to the lack of people willing to stand up and fight,, US petition only needed 25,000 from 1.9 mill sufferers in 30 days, less than 800 signed. In the UK only 5 or 6 have said they e-mailed their MP's so I'm done
Gosh Kev I'm sorry that's terrible after everything you've tried to do.

I have the protocols etc if anyone needs them.

Bram.
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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
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