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Unread 01-18-2013, 10:54 PM   #1
anne523
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I have been on the RSD/CRPS and SSDI sites and just discovered this one last week. I have been just been hanging out and looking at some of the problems/questions. I have RSD of the left hand/arm since July 2011. I had a stellate ganglion block in May of 2012 with poor results..it set me back a good 6 months. I had a peripheral nerve catheter inserted 12/26 for 2 weeks. It didn't hit the most painful parts and I hated having a "dead" arm. I was back in a sling and it was worse than after the initial surgery with the limitations. When the catheter was taken out last week I was given info about SCS and scheduled for the trial. I have done searching and all I find is related to lower extremeties and back. I think I might cancel, with all I have read. Anyone have this done for upper extremity???
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Unread 01-18-2013, 11:29 PM   #2
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Scs are used from head to feet with good results for most. IMHO, I would at least try the trial.
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Unread 01-19-2013, 04:17 AM   #3
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Quote:
Originally Posted by anne523 View Post
I have been on the RSD/CRPS and SSDI sites and just discovered this one last week. I have been just been hanging out and looking at some of the problems/questions. I have RSD of the left hand/arm since July 2011. I had a stellate ganglion block in May of 2012 with poor results..it set me back a good 6 months. I had a peripheral nerve catheter inserted 12/26 for 2 weeks. It didn't hit the most painful parts and I hated having a "dead" arm. I was back in a sling and it was worse than after the initial surgery with the limitations. When the catheter was taken out last week I was given info about SCS and scheduled for the trial. I have done searching and all I find is related to lower extremeties and back. I think I might cancel, with all I have read. Anyone have this done for upper extremity???
dear anne

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many here to help answer
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help you on your journey
if you should take it

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Unread 01-19-2013, 08:25 AM   #4
Mark56
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Heart Well YES Anne

There are those here who have real help from the upper insertion. Since they are also recipients of a lumbar unit in addition to the cervical placement for upper extremity help, we refer to them as having TWINS!

It works, a phenomenon which can only be established through TRIAL. Enduring the trial is the means to discovery whether it will work or not for you. Cancelling will leave you with the unanswered question.

Prayin for your decision,
Mark56
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Unread 01-20-2013, 02:33 PM   #5
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I got an SCS for RSD in my legs in October 2011, and then ended up getting another one for my wrist in June 2012 after the RSD spread. It definitely works for me for my wrist pain! I think that lumbar stimulators are more common (that is what most people here have as well) so the research reflects that, but I and several others here are success stories with cervical implants as well. The leads will be up in your neck, and for the trial, the battery pack will be taped to your mid back. During the trial especially, you will most likely get stimulation in a couple "extra" areas as well, because the spinal cord up in the cervical area is a tight space. I got some stimulation in my other arm at times (and sometimes still do now, but not as much).

It's a big decision, and it's up to you whether you want to go forward with the trial or not. However, if your only reason for wanting to cancel is that you haven't read about cases done for upper extremities- they do work too!
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Unread 01-20-2013, 09:15 PM   #6
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Hi Anne!
I have had RSD for about 22 years now, it is in my face, hands, shoulders, left arm, left leg and both feet. In June 2011, I had the "twins" implanted. I actually get more benefit from the cervical SCS than the thoracic one, although both are great. The cervical stim covers both arms, from shoulder to hand. I am very thankful for them both

It is definitely a big decision to make. The good thing is that you can have the trial before committing to the permanent.

Wishing you the best,
Nanc
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Unread 01-22-2013, 05:27 PM   #7
Rrae
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Smile Hi Anne!

Just wanted to add my 'Welcome' to the SCS forum

This is a great place for support, whether or not you actually get the unit.
It's such a big decision, but you'll find lots of testimonies and information here. Like the others have mentioned, it's pretty common to get cervical units to cover the upper body.

Stick around and let us know what you decide!
We care!

Rae
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Unread 01-29-2013, 08:52 AM   #8
anne523
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thank you to those who shared experience on this decision. i am cancelling the trial today. my husband also thinks this is the best decision. the cervical area is a scary thought..what if something should go wrong? i really don't have help at home as most of you do, and it seems that is a major part on this also. maybe mentally this is not meant for me at this time. i think i have resigned myself to the fact that this is as good as it gets
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Unread 01-29-2013, 10:03 AM   #9
Mark56
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Heart Blessings on you Anne

Tough decisions and best made between you and your hubby. You have much respect flowing around you here in reaching your thought. Praying all will be well with you and that you will be blessed,
Wanting this not to be good as it gets,
for you,
Mark56
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Unread 01-29-2013, 02:11 PM   #10
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Quote:
Originally Posted by Mark56 View Post
Tough decisions and best made between you and your hubby. You have much respect flowing around you here in reaching your thought. Praying all will be well with you and that you will be blessed,
Wanting this not to be good as it gets,
for you,
Mark56
You can always change your mind later if you wish. You might continue researching the procedure anyhow. I waited 17 years after my first trial it was done by an idiot who has since lost his licence and was a total failure.

I had the surgery five weeks ago and it was a complete success. Mine was lumbar like so many of us. I certainly understand not wanting to rush into any surgery if I were not reasonably comfortable with it. Best wishes.

Spine
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