Spinal cord stimulator support

Posted by robyng @robyng, Mar 27, 2024

I recently had a spinal cord stimulator implanted and would love to hear from others who have one and their experiences.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

I had a Medtronic scs inserted and activated about a year ago. After about 6 years of research and seeing different doctors I was finally diagnosed with CRPS which is sometimes called the suicide disease because of the pain.
Anyway I would say I have 85 to 90% pain relief but still take pain meds to get me up and started in the morning. It’s PN related. Sitting with my legs on pillows with a heating pad also helps me but since it’s mainly my left knee I don’t sit very much.
Hard when you’re 86 but I just carry on.
Good luck!

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Profile picture for lillym @lillym

I have an appointment with my neurosurgeon this month and asking if anyone has had SCS put in and what results from it ?

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@lillym I had a SCS implanted just over a year ago. I had a fusion on L4/L5 in 2019. I still have pain but at least Im able to walk long distances. Sitting and standing in place is difficult for me.
Just know that once you commit to having a SCS implanted, you’re stuck with it for years. I recharge my battery every other day. Let me know if you have any other questions.

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Profile picture for anniesezu812 @anniesezu812

My story is too lengthy and its already been told, but I am a SCS nightmare story.
I personally would never, ever recommend this device.

My friend is a Nurse and refused one, her nephew is a Dr and also told her he woukd never advise one. If you are lucky they help. I had bleds in the spinal canal, a lot of scarring , severe pain at site of battery and my body rejected the hardware. I also have nerve damage to right leg. Drs
minimize the side effects, they can be profound and very serious. Pls research thoroughly. Mine is out.

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I’ve had one for 2yrs now for CRPS in my legs. Lately I’ve been turning mine off and have found that I’m in more pain with it on then when it’s shut off. I’m thinking I want it taken out! But no one will tell me the risks of getting it removed, my dr said that scar tissue grows over the leads so I’m scared to have someone cutting through my spinal tissue/scar tissue😔

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Profile picture for daxel79 @daxel79

I’ve had one for 2yrs now for CRPS in my legs. Lately I’ve been turning mine off and have found that I’m in more pain with it on then when it’s shut off. I’m thinking I want it taken out! But no one will tell me the risks of getting it removed, my dr said that scar tissue grows over the leads so I’m scared to have someone cutting through my spinal tissue/scar tissue😔

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@daxel79
I felt the same and im suffering from exactly that.
At least your Dr was honest. I was met with a wall of SILENCE from Drs. But i trusted my gut and knew it had to come out.
I have pain from Celiac Plexus from an untreated abdominal injury...I was left 6 yrs in horrific pain
because it didnt show on scans, so I have severe CRPS. This has made my recovery very difficult . It was a HARD decision because finally after 1 year I was recovering from the damage SCS did to me early on ( spasms, nerve damage, many bulging discs...related or not who knows).
The only advice I can give you is make sure you have an excellent surgeon remove it. Fortunately my Pain Dr left, so I had to find a new team and my 1st class surgeon came with them.
For me the concerns of more bleds and migrating leads led to my decision . I am RELIEVED it is out. I also had terrible pains with it on. Weight up your pros and cons carefully. My surgery was brutal and so is my recovery but i KNEW I needed it out.
Pls keep me us updated. You are welcome to PM me. Your situation is probably not as severe as mine, so dont be put off by my situation. I have had CRPS for 17 years . Others recover well and quickly.
Best of luck.

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Profile picture for daxel79 @daxel79

I’ve had one for 2yrs now for CRPS in my legs. Lately I’ve been turning mine off and have found that I’m in more pain with it on then when it’s shut off. I’m thinking I want it taken out! But no one will tell me the risks of getting it removed, my dr said that scar tissue grows over the leads so I’m scared to have someone cutting through my spinal tissue/scar tissue😔

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@daxel79 A competent neurosurgeon should have no problem removing your scs. Even the scar tissue should be able to be removed in order to access the leads.

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I got 2 strokes out of mine … the pain has me run down like a battery..

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Profile picture for grinchy @grinchy

@stantallusa may I ask, what is your condition?.. I’m fused and soooo scared to even do the trial..

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I had one fitted in 2014… it broke down loads of limes … then stopped working in 2019 and left in me till nov2024 …
They promised me back up and full support… all I got was pure superfluous bullshit . … they did not no there arsh from there elbow …
If your getting one fitted, get in writing the support and maintenance up date of the device, get it in writing that the device is approved by the FDA world wide.. and no recalls are pending… then see who’s who in the spinal cord stimulator world .. think twice it made my life a living hell I can’t make a living over it ..

Take care …

Good luck

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I got 2 strokes out of mine … the pain has me run down like a battery..

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