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 01-26-2010, 04:28 PM #1
sukadog sukadog is offline
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Default considering spinal cord stimulator

hi,
my rsd is my right hand/arm so i keep typing to a minimum. I've had 7 or 8 stellate ganglion blocks and most of them were very effective for a week or so, with a good cumulative improvement. but, i recently had an unrelated procedure and despite big signs all around me warning not to touch/cover my arm, i awoke at pain level 10- my arm had been moved and covered with a blanket. since then, i felt like a backslid on the pain relief and burning relief i had been getting. my dr also spread out the time between the blocks, so when i went for the last one, it looked, felt burned as much as it had after just 2-3 blocks. now my dr says that since the pain/burning relief isn't lasting we need to consider spinal cord stim. the dvd looks good, but i want to know if this worked (or didn't) for rsd in arm/hand. is it effective there? more dangerous/complicated? i would love to be able to sit through a movie without pain, and maybe get back to some of the activities i used to love, but i don't know if this would be putting even more restrictions on what i can do and potentially more risk than blocks. any info would be appreciated. thank you
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Old 01-26-2010, 10:30 PM #2
AintSoBad AintSoBad is offline
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I've been watching this subject, having RSD for more than 26 years.
I find that lots of folks hate the stimulator, and really get much better relief with the pump.
Check into that.

Best of wishes to ya.

pete

asb
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Old 01-26-2010, 10:39 PM #3
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Default it helps for some

[ sukadog
My husband has rsd in left arm/hand. He had a scs implant in Dec. He has no regrets. I have seen some on here that it was not successful and others who have had it for many years and love it. My husband is off all his pain meds, however there are limits to what he can do (not lifting over certain weights, not lifting things over his head). He feels it was the best decision for him. The pain meds restricted a lot of things he could do anyways, as he didn't really get great relief from them and they goofed his head. Each person has to decide what they are willing to live with and what gives them the best quality of life. I wish you the best!
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Old 01-26-2010, 10:43 PM #4
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Default Scs

Hi Sukadog
I've had the 5-day trial SCS. Mine would be for both legs tho, so I don't know much about the upper units. There are several here who will give good input for you.
The only real negative feedback I've heard is the potential for RSD spread with these stimulators.
Anxious to see what feedback you get
Good Luck

Rae
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Old 01-26-2010, 11:31 PM #5
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I have a SCS for my RSD in my right arm and shoulder. I am 20 years old... It helped me alot. I got hurt again and had to get ketamine... Where are you located at? How old are you?

There are pro's and con's to getting it and not getting it. There is always a chance of the RSD spreading when you get it, but for me... I took the chance knowing that it could help me and i could gain so much of my life back and get off medications. Especially feeling at the point of having nowhere to go but there... there are physical limitations, but then again RSD gives you physical limitations so its best we don't do that stuff. Any specific questions? you can pm me if you'd like to ask anything
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Old 01-27-2010, 12:21 AM #6
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I totally totally second this! I love my SCS. Ive gone through some revisions of the leads, and it has been a journey, but I wouldn't trade it for the world. It makes me function, and it makes me function with way less medication than I would have been on. If you look up some old threads, I wax a bit more poetically on the subject than I am right now. But if you have any questions about it, feel free to ask or pm me.

Hope this helps!
Lynn
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Old 01-27-2010, 06:47 AM #7
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Quote:
Originally Posted by Lynns409 View Post
I totally totally second this! I love my SCS. Ive gone through some revisions of the leads, and it has been a journey, but I wouldn't trade it for the world. It makes me function, and it makes me function with way less medication than I would have been on. If you look up some old threads, I wax a bit more poetically on the subject than I am right now. But if you have any questions about it, feel free to ask or pm me.

Hope this helps!
Lynn
I have had my SCS unit, wired for both legs since Sept. 08. Admittably, I don't turn it on as it irritates my RSD and it has caused spread, now RSD in my left shoulder, hip and right side of my jaw...... Everyone feels differently about having their unit. Some positive some negnative... you really just have to decide if it is worth the gamble and follow your feelings... could be a wonderful help to you or it may be a henderence.... Sorry but none of us can give you the exact answer in which route to follow....I've heard the pain pump is a good option...

Wish I had the magic answer for you... please let me know if I can help you...KS
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Old 01-28-2010, 02:56 PM #8
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Default Research..

This study may be of interest.. I would do alot of research on any new procedure before trying it myself, remember this is just one study, one opinion.

Brush-evoked allodynia predicts outcome of spinal cord stimulation in Complex Regional Pain Syndrome type 1

http://www.europeanjournalpain.com/a...ext#back-bib12

Be well,
Sandra


http://www.facebook.com/pages/RSDCRP...2468621?ref=ts
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Old 01-28-2010, 03:41 PM #9
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Quote:
Originally Posted by rsdwife View Post
[ sukadog
My husband has rsd in left arm/hand. He had a scs implant in Dec. He has no regrets. I have seen some on here that it was not successful and others who have had it for many years and love it. My husband is off all his pain meds, however there are limits to what he can do (not lifting over certain weights, not lifting things over his head). He feels it was the best decision for him. The pain meds restricted a lot of things he could do anyways, as he didn't really get great relief from them and they goofed his head. Each person has to decide what they are willing to live with and what gives them the best quality of life. I wish you the best!
Thank you so much! That's very encouraging and I'm glad it's working for him. Can you tell me a bit about precautions: whether he can go to stores that have theft detector gates? Can you use a microwave at your home? I know these are silly little things compared with the possible benefits; I'm not concerned about giving anything up, but about whether little things can interfere with the device. Thanks again!
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Old 01-28-2010, 03:44 PM #10
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Quote:
Originally Posted by keep smilin View Post
I have had my SCS unit, wired for both legs since Sept. 08. Admittably, I don't turn it on as it irritates my RSD and it has caused spread, now RSD in my left shoulder, hip and right side of my jaw...... Everyone feels differently about having their unit. Some positive some negnative... you really just have to decide if it is worth the gamble and follow your feelings... could be a wonderful help to you or it may be a henderence.... Sorry but none of us can give you the exact answer in which route to follow....I've heard the pain pump is a good option...

Wish I had the magic answer for you... please let me know if I can help you...KS
Thanks so much for your response! I'm very sorry that it was such a terrible experience on top of the pain and frustration of the original RSD. I hope something helps relieve your pain. Thank you.
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