SCS & Pain Pumps For spinal cord stimulator (SCS) and pain pump discussions.

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Old 05-17-2012, 09:01 PM #1
Neko1221 Neko1221 is offline
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Thank you all so SO much for all of your replies! What an amazing group you guys are!! I honestly expected maybe one reply, so this is really great! I'm a member of another support group that has gotten to the point that if you dont want to try exactly what they are telling you to do, they really kinda make you feel shunned! One person has even said 'I just cant understand not wanting to get better because "" will do that, yet you're not willing to try it.' Pretty harsh IMO! I mean, of course I want to get better - more than anything in the world, but that doesnt mean I can afford or am willing to try things I'm not comfortable with!

I've learned that I really do need to start doing a lot of research - you guys have shown me that I'm pretty much clueless about SCS!! I really only knew the bad 'dont get that, it'll make your RSD spread - it'll get worse - it wont help - it fails shortly after getting it - and many more negatives' so I was scared to death of it!! I'm so glad that I took my Dr's advice and asked for the good to go along with the bad!!!

I'm certain that I'll have a million questions as I start my research journey, so thank you again for making me feel so welcomed and making me feel comfortable asking for help/guidance/advice.

My pain is through the roof tonight, so I had to take some of my stronger meds (which I hate) and its made me feel a bit wonkey. I'll be back tomorrow to read through all of the responses again and starting putting together my list of questions as well as answer any questions that were asked of me.

Again, thank you all SOOOO much!!

~Trisha
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anon21816 (05-18-2012), Nanc (05-17-2012), Rrae (05-18-2012)
Old 05-17-2012, 09:07 PM #2
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Sorry you are having a bad day with your pain Trisha, hope tomorrow is better for you.

Glad you came here for insight, there is a great group here and they (we) will all be here for you when you have your questions.

Take care -
Nanc
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Old 05-19-2012, 04:01 PM #3
CRPSjames CRPSjames is offline
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Default Spinal Cord Stimulators and CRPS

Hi Neko,

Sorry you are having such a tough time of it lately.

This is a great place to come for feedback and information from people who have had SCS for various kinds of disorders.

In evaluating answers to your specific question about responses to SCS with the diagnosis of CRPS/RSD be very careful that the responses you review are from those who have been diagnosed with CRPS/RSD. You may also use your search button to look for people with the diagnosis of CRPS/RSD who have had spinal cord stimulators implanted.

I had a great response to my Boston Scientific Stimulator. I was on top of the world for about twenty months when it failed and left me with debilitating spreads. (You can read some of my prior posts to learn of the specifics) The point is that reading people's stories is a good way to evaluate if the risks involved are worth it for you. Just be sure that you compare apple to apples since the failure and spread rate for CRPS patients is high compared to that of Failed Back Syndrome, for which SCS received approval by the FDA.

Even still, spreads caused by SCS are frequently treated with the implantation of another SCS to control the spread pain. Some view that as a viable option. Only you can decided.

I recently found this link that is helpful, particularly when evaluating the effectiveness of a SCS with a diagnosis of CRPS.

http://painsandiego.com/category/spi...stimulators-2/

It is also instructive to request scientific evidence of the safety and effectiveness of SCS for CRPS from your implanting physician.

Best to you in whatever you decide!

Last edited by CRPSjames; 05-19-2012 at 07:41 PM.
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