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Medtronic Spinal Cord Stimulator for a 36 yo w/low back pain/epilepsy

Posted by noelia88 @noelia88, Aug 21, 2024

Hello, I am 36 years old and I have epilepsy for the past 11 years (it started with my pregnancy and they never stopped). Since then I have had low back pain that gets worse after every episode, It never gets better, sometimes the injections helped but not anymore, physical therapy, acupuncture, massages didn't work ether. My back MRIs and X-rays are unremarkable but I still have this pain that doesn't let me have a normal life and puts me down to bed. Now, my pain management doctor is recommending SCS by medtronics and I would like to hear from others that have done SCS or that are in the process. Thank you.

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John, Volunteer Mentor | @johnbishop | Aug 31, 2024
In reply to @cynthi13 "Hello. I am 73 years old and am having severe sciatica. I have scoliosis, with a..." + (show)
Profile picture for cynthi13 @cynthi13

Hello. I am 73 years old and am having severe sciatica. I have scoliosis, with a 48 degree curvature. I have had the temporary SCS implanted and when it was removed, I realized it had given me about 50% pain relief. After removal, I am experiencing severe sciatica, which has affected my ability to walk, without the use of a cane. I am going to have the SCS permanently implanted and would like to hear from if any of you have had this implant and if so, was it successful. Thanks

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Hello @cynthi13, I would like to add my welcome to Connect along with @heisenberg34 and others. There are a few other discussions and member comments on Medtronic SCS devices that you might want to scan through. Here's the list - https://connect.mayoclinic.org/search/discussions/.

You might also want to scan through the discussions for other SCS devices for comparisons to learn what others have shared - https://connect.mayoclinic.org/search/.

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Profile picture for cynthi13
cynthi13 | @cynthi13 | Aug 31, 2024
In reply to @cynthi13 "Hello. I am 73 years old and am having severe sciatica. I have scoliosis, with a..." + (show)
Profile picture for cynthi13 @cynthi13

Hello. I am 73 years old and am having severe sciatica. I have scoliosis, with a 48 degree curvature. I have had the temporary SCS implanted and when it was removed, I realized it had given me about 50% pain relief. After removal, I am experiencing severe sciatica, which has affected my ability to walk, without the use of a cane. I am going to have the SCS permanently implanted and would like to hear from if any of you have had this implant and if so, was it successful. Thanks

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Thank you!

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Profile picture for kburt911
kburt911 | @kburt911 | Sep 19, 2024
In reply to @cynthi13 "Hello. I am 73 years old and am having severe sciatica. I have scoliosis, with a..." + (show)
Profile picture for cynthi13 @cynthi13

Hello. I am 73 years old and am having severe sciatica. I have scoliosis, with a 48 degree curvature. I have had the temporary SCS implanted and when it was removed, I realized it had given me about 50% pain relief. After removal, I am experiencing severe sciatica, which has affected my ability to walk, without the use of a cane. I am going to have the SCS permanently implanted and would like to hear from if any of you have had this implant and if so, was it successful. Thanks

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I did the trial with the Abbott stimulator and I had about 80 percent relief so I went for the permanent one. Unfortunately I have had no results in pain relief even though they say you should get about 50 percent. Right now the stimulator is just sitting in my back. Do yourself a favor and ask questions about how the process works after implant. I was given very little instruction as what to expect afterwards. I haven't heard from my rep in over a month and I can't increase the power as they set limits and then you are locked out. It has been very disappointing. I have reached out to my pain doctor who did the implant to see if he can me help.

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3 replies
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cynthi13 | @cynthi13 | Sep 19, 2024
In reply to @kburt911 "I did the trial with the Abbott stimulator and I had about 80 percent relief so..." + (show)
Profile picture for kburt911 @kburt911

I did the trial with the Abbott stimulator and I had about 80 percent relief so I went for the permanent one. Unfortunately I have had no results in pain relief even though they say you should get about 50 percent. Right now the stimulator is just sitting in my back. Do yourself a favor and ask questions about how the process works after implant. I was given very little instruction as what to expect afterwards. I haven't heard from my rep in over a month and I can't increase the power as they set limits and then you are locked out. It has been very disappointing. I have reached out to my pain doctor who did the implant to see if he can me help.

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I am so sorry you are still having pain and dealing with this! I have read so many responses where the temporary SCS worked but the permanent one did not. This has made me weary about the SCS. I am seriously considering surgery because if the pain I am having. Good luck to you!

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1 reply
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heisenberg34 | @heisenberg34 | Sep 19, 2024
In reply to @kburt911 "I did the trial with the Abbott stimulator and I had about 80 percent relief so..." + (show)
Profile picture for kburt911 @kburt911

I did the trial with the Abbott stimulator and I had about 80 percent relief so I went for the permanent one. Unfortunately I have had no results in pain relief even though they say you should get about 50 percent. Right now the stimulator is just sitting in my back. Do yourself a favor and ask questions about how the process works after implant. I was given very little instruction as what to expect afterwards. I haven't heard from my rep in over a month and I can't increase the power as they set limits and then you are locked out. It has been very disappointing. I have reached out to my pain doctor who did the implant to see if he can me help.

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Your rep should not be ghosting you. Call the main office and ask why this is happening. No excuse for this type of thing.

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1 reply
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alexis7 | @alexis7 | Sep 20, 2024
In reply to @kburt911 "I did the trial with the Abbott stimulator and I had about 80 percent relief so..." + (show)
Profile picture for kburt911 @kburt911

I did the trial with the Abbott stimulator and I had about 80 percent relief so I went for the permanent one. Unfortunately I have had no results in pain relief even though they say you should get about 50 percent. Right now the stimulator is just sitting in my back. Do yourself a favor and ask questions about how the process works after implant. I was given very little instruction as what to expect afterwards. I haven't heard from my rep in over a month and I can't increase the power as they set limits and then you are locked out. It has been very disappointing. I have reached out to my pain doctor who did the implant to see if he can me help.

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I agree with Heisenberg and maybe ask for a different rep. I have an Abbott Wavewriter SCS. A rep (there are two or three for my area) contacts me within hours of my text or call, sometimes that evening but never the next day. I have had it reprogrammed a few times and I never wait more than week to be seen for that. Go up the ladder, area rep, district rep, regional rep - whatever and contact someone at Abbott customer support because what you're experiencing is totally unacceptable. Does your doctor know how you're being ignored? They should be contacting the rep too. I am so sorry you're dealing with this and hope you get the help you deserve.

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1 reply
Profile picture for cynthi13
cynthi13 | @cynthi13 | Sep 20, 2024
In reply to @cynthi13 "Hello. I am 73 years old and am having severe sciatica. I have scoliosis, with a..." + (show)
Profile picture for cynthi13 @cynthi13

Hello. I am 73 years old and am having severe sciatica. I have scoliosis, with a 48 degree curvature. I have had the temporary SCS implanted and when it was removed, I realized it had given me about 50% pain relief. After removal, I am experiencing severe sciatica, which has affected my ability to walk, without the use of a cane. I am going to have the SCS permanently implanted and would like to hear from if any of you have had this implant and if so, was it successful. Thanks

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How does your Abbott Wavewriter SCS work for you? Does it eliminate your pain.?

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1 reply
Profile picture for vikkitennis
vikkitennis | @vikkitennis | Sep 20, 2024
In reply to @cynthi13 "Hello. I am 73 years old and am having severe sciatica. I have scoliosis, with a..." + (show)
Profile picture for cynthi13 @cynthi13

Hello. I am 73 years old and am having severe sciatica. I have scoliosis, with a 48 degree curvature. I have had the temporary SCS implanted and when it was removed, I realized it had given me about 50% pain relief. After removal, I am experiencing severe sciatica, which has affected my ability to walk, without the use of a cane. I am going to have the SCS permanently implanted and would like to hear from if any of you have had this implant and if so, was it successful. Thanks

Jump to this post

When the Abbott rep doesn't respond to my texts after 24 hours, I contact the neurosurgeon who placed the SCS in. He is on it like a fly, and I hear from them within an hour.

REPLY
Profile picture for kburt911
kburt911 | @kburt911 | Sep 20, 2024
In reply to @cynthi13 "I am so sorry you are still having pain and dealing with this! I have read..." + (show)
Profile picture for cynthi13 @cynthi13

I am so sorry you are still having pain and dealing with this! I have read so many responses where the temporary SCS worked but the permanent one did not. This has made me weary about the SCS. I am seriously considering surgery because if the pain I am having. Good luck to you!

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Thank you.best to you.

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Profile picture for kburt911
kburt911 | @kburt911 | Sep 20, 2024
In reply to @heisenberg34 "Your rep should not be ghosting you. Call the main office and ask why this is..." + (show)
Profile picture for heisenberg34 @heisenberg34

Your rep should not be ghosting you. Call the main office and ask why this is happening. No excuse for this type of thing.

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My pain doctor said he will handle it.

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