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😔
@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.
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😔
@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.
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 ..
@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.
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.
@anniesezu812
I am so sorry it didn’t help you and seemed to make things worse. Obviously not the outcome one wants but no outcome is usually ever, IF ever, guaranteed in medicine. We are all so individual that one size cannot work for all. 😢
I was a RN who developed back pain and neck pain. I have had 2 back surgeries including spinal fusion and 1 neck surgery, also fusion.
My first back surgery was in 2011. It was good until about 6 years ago when I did something really dumb with my back (don’t ask). I got the Medtronics SC stimulator implanted in January of whatever year Covid made its appearance. I did have to get it adjusted as to where I needed the most sensations which is not done surgically - I met the rep in office and that really helped. I was great until about 2022 when I started getting severe sciatica pain down one leg. I would walk about a mile but then limp home. I finally agreed to surgery (put it off for a year) and had more decompression and fusion done in 3/24. I used the stimulator for post op pain relief for about 10 weeks (plus meds). I haven’t needed to use it since 🤞
I’m 75 so I’m not holding my breath I won’t have back pain again but so far so good.
The neck, argh. I refuse to have another surgery because it would be far more complicated than my first plus other factors that I just didn’t like hearing about re possible complications. It hurts. Bah. 😢
@anthony29621
Wow...so sorry. We all have a story....I guess that's why we're are here.
I honestly feel if we are brave enough we should contact the FDA. They do welcome feed back on such devices. Removal numbers of device are relatively high...guess its lucrative for the Docs😒. Hope you're well.
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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.
@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.
I got 2 strokes out of mine … the pain has me run down like a battery..
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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
I got 2 strokes out of mine … the pain has me run down like a battery..
Hi,
Who made the SCS you had implanted? There seems to be a bunch of complanys that make them. Thanks.
Matt
@mattwa600 Mine was Boston Logistics
@anniesezu812
I am so sorry it didn’t help you and seemed to make things worse. Obviously not the outcome one wants but no outcome is usually ever, IF ever, guaranteed in medicine. We are all so individual that one size cannot work for all. 😢
I was a RN who developed back pain and neck pain. I have had 2 back surgeries including spinal fusion and 1 neck surgery, also fusion.
My first back surgery was in 2011. It was good until about 6 years ago when I did something really dumb with my back (don’t ask). I got the Medtronics SC stimulator implanted in January of whatever year Covid made its appearance. I did have to get it adjusted as to where I needed the most sensations which is not done surgically - I met the rep in office and that really helped. I was great until about 2022 when I started getting severe sciatica pain down one leg. I would walk about a mile but then limp home. I finally agreed to surgery (put it off for a year) and had more decompression and fusion done in 3/24. I used the stimulator for post op pain relief for about 10 weeks (plus meds). I haven’t needed to use it since 🤞
I’m 75 so I’m not holding my breath I won’t have back pain again but so far so good.
The neck, argh. I refuse to have another surgery because it would be far more complicated than my first plus other factors that I just didn’t like hearing about re possible complications. It hurts. Bah. 😢
@anthony29621
Wow...so sorry. We all have a story....I guess that's why we're are here.
I honestly feel if we are brave enough we should contact the FDA. They do welcome feed back on such devices. Removal numbers of device are relatively high...guess its lucrative for the Docs😒. Hope you're well.