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


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Old 09-30-2012, 12:47 PM #11
SnowWhyte SnowWhyte is offline
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Smile Hi!

Hey there!
I was 23 when I was dx w/CRPS and after having tried EVERYTHING under the sun (much like you have), I am now 25 and on my way to my SCS trial very shortly (w/in the next couple weeks). I can't live with this pain the rest of my life, and as much as I resisted it, I've gotta give SCS a chance. There is no "right" age to suffer! Although you'd think some docs think I should, given their reaction to me- but that's a cross many of us w/CRPS must bear (bare?) lol, anyway, w/a condition that sounds very similar to mine, I'd say go for it. Good luck, and God Bless!
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Old 09-30-2012, 04:31 PM #12
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Smile Hello SnowWhyte!

Welcome to the forum!

Plenty of great support here!
You are so very right - there are NO 'rules' or guidelines to how old you may or may not be. Altho, you will probably get certain people insisting this or that. YOU are the only one who knows what you've been thru, what your relationship to your Dr is like, what your pain condition is, how it is affecting your quality of life, and where you are in your treatment plan.

I'm sure you've done much research and have read the diverse testimonies of others who have gone before you.
CRPS is a nasty ruthless condition. The surgical procedure of getting the SCS has caused spread in some CRPS patients, others have been delighted with the outcome.

IMHO, one of the utmost important things in considering this procedure is having a doctor you completely trust and who is well-versed and experienced in doing these implants.

We'll be very anxious to hear how your trial goes! Please ask anything you wish. People come on board here with many questions and concerns, so don't feel alone in this!

You've got friends!
Rae
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Old 10-07-2012, 10:57 PM #13
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I was in my 40's when I had the trial and the implant of the MedTronic spinal cord stimulator. The trial went fine, but the representative of the company gave me SO MANY restrictions that I didn't get a good assessment of pain relief. She didn't let me do anything to speak of -- and i didn't know enough about it to know if she knew what she was doing! So I followed her instructiions to the "T."

Since the trial went fine, I had the implant done. That went fine, but I was finding that I wasn't getting any pain relief. In fact it seemed like the stimulation was actually irritating the sciatic nerve even more (the reason i had it implanted was severe sciatica) So they reprogrammed it several times, to no avail. It still irritated things. PLUS -- the darn "generator" was trying to work itself OUT of me, since I am quite thin. The corners of the darn thing were sticking out! So we had to take the whole ball of wax out -- the leads and everything. I now have scar tissue in my upper back where the leads were that gives me trouble. I had it implanted for 6 months. I guess i grow scar tissue quite fast!

I wish it had worked. Now every neurosurgeon I've seen, including heads of major hospitals, have deemed me inoperable -- and my only choice of pain relief is medication. And we all know how successful we are at getting proper dosages. Needless to say, I'm very uncomfortable. This has been going on for 26 years and Im very tired.

Best of luck to all who try the SCS. Most people have better luck than I did. But if you're skinny -- be careful! Hugs, Lee
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recovering alcoholic, sober since 7-29-93;severe depression; 2 open spinal surgeries; severe sciatica since 1986; epidurals; trigger points; myelograms; Rhizotomy; Racz procedure; spinal cord stimulator implant (and later removal); morphine pump trial (didn't work);now inoperable; lumpectomy; radiation; breast cancer survivor; heart attack; fibromyalgia; on disability.



Often the test of courage is not to die, but to live..
.................................................. ...............Orestes
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Old 10-07-2012, 11:27 PM #14
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Heart Dear Leesa

Thank you so for bringing your experiences to this thread so others may know of your life and hardship with pain and SCS. I am so saddened you had such difficulty both with the procedures and with the scarring afterward.

Yes, the medications are so limited in pain management. The situation of my sister-in-law, Terri, who with RSD, now known as CRPS has lived these twenty plus years with none but the meds and she carries the meds always, taking now more of them than would normally kill the ordinary individual.

Thus, I pray you are given peace from your pains and that you realize blessings in your life.
Mark56
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Old 10-08-2012, 10:39 AM #15
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Quote:
Originally Posted by Mark56 View Post
Thank you so for bringing your experiences to this thread so others may know of your life and hardship with pain and SCS. I am so saddened you had such difficulty both with the procedures and with the scarring afterward.

Yes, the medications are so limited in pain management. The situation of my sister-in-law, Terri, who with RSD, now known as CRPS has lived these twenty plus years with none but the meds and she carries the meds always, taking now more of them than would normally kill the ordinary individual.

Thus, I pray you are given peace from your pains and that you realize blessings in your life.
Mark56
Dang Leesa...I am sorry it did not work for you...I do also thank you for bringing your experience here...I am learning from everyone and now you...I now also take more meds for the pain of the SCS surgery than I did for the original injury (motor vechile accident)..I adjust them daily.
I count my blessings and send some your way.
I want to start a new thread soon on opinions on removal of the SCS....I do hope you post there...first I have to get my day work done....I can just la de da all day on the PC.
ya'll have the best of days
johanna
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Old 10-08-2012, 09:31 PM #16
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Heart Dear Johanna

Quote:
Originally Posted by Hannabananna View Post
Dang Leesa...I am sorry it did not work for you...I do also thank you for bringing your experience here...I am learning from everyone and now you...I now also take more meds for the pain of the SCS surgery than I did for the original injury (motor vechile accident)..I adjust them daily.
I count my blessings and send some your way.
I want to start a new thread soon on opinions on removal of the SCS....I do hope you post there...first I have to get my day work done....I can just la de da all day on the PC.
ya'll have the best of days
johanna
Saffy, Sophie, and Tchr012 may want to chime in regarding removal, while Pooh will maybe come along since she in on third iteration over time, so she has experienced removal and replacement.
May you be well,
Prayin,
Mark56
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Old 10-09-2012, 08:35 AM #17
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I am convinced that Lee and I are twins, seperated at birth. We have both been around here forever and been through most of the "fads" that have been offered to spinal patients. Sometimes I feel like a lab rat that somehow survived some of the treatments and meds that are no longer commonly used. I am no longer skinny so I expect success with my scs, if the Fibro doesn't interfere. I can't believe how it was done last time. No wonder it failed (big time) and I refused to consider it for 18 years thereafter. Everyone have a blessed day.
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Old 10-11-2012, 10:55 PM #18
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Thumbs up Thanks Leesa!

It's good to see you! Thanks for sharing your testimony, although I'm very sorry that you had that experience. I wish it would have gone better for you, as I know you've been through so much.

Your feedback is very much appreciated!

Rae
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Old 10-11-2012, 11:01 PM #19
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Smile Checkin on SnowWhyte....

Quote:
Originally Posted by SnowWhyte View Post
Hey there!
I was 23 when I was dx w/CRPS and after having tried EVERYTHING under the sun (much like you have), I am now 25 and on my way to my SCS trial very shortly (w/in the next couple weeks). I can't live with this pain the rest of my life, and as much as I resisted it, I've gotta give SCS a chance. There is no "right" age to suffer! Although you'd think some docs think I should, given their reaction to me- but that's a cross many of us w/CRPS must bear (bare?) lol, anyway, w/a condition that sounds very similar to mine, I'd say go for it. Good luck, and God Bless!
Just wondrin' if you are close to getting your trial surgery, or if you've already had it done?

Let us know how you are doin when you're up for it, k!

Caring,
Rae
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