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


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View Poll Results: Do you have a SCS or Pain pump?
SCS? 121 85.21%
SCS?
121 85.21%
Pain pump? 13 9.15%
Pain pump?
13 9.15%
Worked well for me 38 26.76%
Worked well for me
38 26.76%
Works somewhat / partially 44 30.99%
Works somewhat / partially
44 30.99%
Didn't work for me 9 6.34%
Didn't work for me
9 6.34%
Had to have it removed 13 9.15%
Had to have it removed
13 9.15%
Had medical complications 15 10.56%
Had medical complications
15 10.56%
Had mechanical malfunctions 10 7.04%
Had mechanical malfunctions
10 7.04%
Still in but turned off 17 11.97%
Still in but turned off
17 11.97%
Other issues explain in a post please. 20 14.08%
Other issues explain in a post please.
20 14.08%
Multiple Choice Poll. Voters: 142. You may not vote on this poll

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Old 02-15-2012, 04:01 PM #21
dcp491954 dcp491954 is offline
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Default problems with my scs implant

I have had sufferd back pain for over 20 years and had have several major back surgeries. The past six years I have suffered with chronic back pain. Was placed into pain management. After many injections, it was suggested that I should consider a trial stimulator. THe trail went well and pain level wnet down. Was than scheduled and had my implant done back in Sept. Now several months after I have pain in the area if the implant I cant stand anything touching it as it causes alot of pain, I cant not sleep on my left and if I do I wake in pain and my left leg is numb. The doctors want to try and place th implant in deeper, and I dont know what I should do. I am thinking about going to local ER and just having it taken out. Has anyone had this problems?"
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Old 02-15-2012, 05:14 PM #22
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Quote:
Originally Posted by dcp491954 View Post
I have had sufferd back pain for over 20 years and had have several major back surgeries. The past six years I have suffered with chronic back pain. Was placed into pain management. After many injections, it was suggested that I should consider a trial stimulator. THe trail went well and pain level wnet down. Was than scheduled and had my implant done back in Sept. Now several months after I have pain in the area if the implant I cant stand anything touching it as it causes alot of pain, I cant not sleep on my left and if I do I wake in pain and my left leg is numb. The doctors want to try and place th implant in deeper, and I dont know what I should do. I am thinking about going to local ER and just having it taken out. Has anyone had this problems?"
Welcome to NT!
I'm sorry about this pain that has plagued you for so long.
How well does your SCS cover your pain?
I doubt that ER will remove the implant. They would probably have the procedure scheduled and then you wouldn't have the high expense of the ER charges. Have you lost weight since your implant was done? (pointed question I know ) Reason I ask is because this happened to me. I had been on a bad medication that caused me to gain about 40 lbs. After my implant I didn't take that med anymore and began to lose the weight. This is when I noticed the unit began 'moving' to the surface of my skin and I thought the battery was working it's way OUT! Well, that wasn't the case. It was because of losing weight. The extra 'flesh' was melting away. The site began to get pretty sensitive. Since then, tho, I have become used to it and it's no bother now.

The reason I asked if your unit covers your pain is because if it does, I wouldn't want to get rid of it. If your Dr wants to make a deeper pocket for it to sit in, then that probably wouldn't be that big of a deal. It'll just be tender from the surgery for awhile. Hopefully he wouldn't put it in too deep because you might have a hard time making a connection with your charger when you go to charge the battery.

There are these padded adhesives (I think 'Johnson & Johnson' make them). You place them over the tender part and it'll cushion it from the outside world.

Stick around! There's plenty of support and caring people here. If you want to start a thread of your own down below, just exit out of this dialogue and click on the 'New Thread' option at the upper left of the screen.

It's great to have you here!

Caring,
Rae
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Old 02-15-2012, 09:12 PM #23
dcp491954 dcp491954 is offline
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Default

Thanks for the advice. No I have not lost weight. Like I stated it just started to get very sensitive. I cant stand to have even a t-shirt touch it. AS for the pain is not covering as well as it had in the begining. I have had it reprogramed twice already. The unit I have when the battery dies I need to have them cut me open again and replace the batteries. My insurance would not cover the more expensive unit. I am scheduled to have it moved deeper in on Monday but I am truly nerverous I am sorry I went this far.
Again thanks for your support and the information you supplied
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Old 02-17-2012, 12:22 AM #24
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Default I see....

Ok, I see where you're at with this. I can understand why you feel uncomfortable about this. I was hoping that your SCS was doing a pretty good job of covering your pain.

Down below is where the active posting is (you and I are communicating up in the "sticky's" and not many people see this). Anyway, there are quite a few Scs'ers down there who have had this problem - where their unit seems to lose it's 'Pazzazz' (?) Sometimes it's the battery getting weaker. Other times it just takes more tweak sessions. Then there are the instances where it's the scar tissue to blame. Our friend Jackie had this problem and her Dr said that the scar tissue continues to change it's form and sometimes it can 'encase' the leads/electrodes, which stifles the stimulation effect. Jackie has had her unit for a couple of years and is still having scar tissue issues. Her Dr feels confident that he can get better stimulation if he tweaks around. This is why it is necessary to be tweaked every so often. Others don't seem to have this problem tho.

Since you've got the non-rechargable unit, I'm not sure what to think. You haven't had it in very long so I wouldn't think that the battery could be dying already. HOWEVER Jackie had to have her battery changed out only a few months after her implant. She had a dud of a battery. So, I guess this does happen, but I hope it's not the case with you.

Do you feel confident in your Dr? If he sounds confident in making some adjustments on you, then maybe it's worth a go. I wonder if there's a way he could check the status of your battery while he's in there.

I can certainly understand why you feel tempted to just throw in the towel tho. If it's that sensitive and painful, that would be hard to deal with on a longterm basis.

Please keep us informed of how your appointment goes on Monday. I'm curious to know what doc will have to say. We could probably learn from your experience.

I wish you well for Monday and thereafter. I really hope this will work out for you.

Rae
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Old 06-14-2012, 07:03 PM #25
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Default SCS severe back pain

Hope Im in the right place .....Hi guys, I had SCS surgery in December 11.my CRPS is in my left foot.I am still having severe pain around the surgery sites.Cant do much of anything.Still on crutches and in wheelchair.I would love to hear of fellow scs implant people.Im in UK and had my scs surgery at The Walton Centre .my neuro nurse check up is in August...any advice etc
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Old 08-07-2012, 01:53 AM #26
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Default NO to SCS

I had my first one put in and it lasted 1 year and was not getting all areas. Decided to have more leads ( I thought) put in on Dec 1,2011. A man not from Boston Scientific but from St. Jude was there. Says you are getting a whole new model. They had already started they anethesia, I wasn't going too far. Woke up with the battery pack right at my waist line. Noone came back to tell me how to use, charge, anything. January I sat down in a chair and had to move the internal box with my bare hands to sit back. Got to the point it started shocking me if it moved out of it cubby hole. Then it wouldn't shut off and started shocking me. I had it removed on May 14. My heart stopped in the recovery room 2 times due to the shocking it had done to my system. Good luck to all they work for I am happy you are blessed to have them work. Just not for me.
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Old 08-08-2012, 06:21 PM #27
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Quote:
Originally Posted by chrisandrob4ever View Post
I had my first one put in and it lasted 1 year and was not getting all areas. Decided to have more leads ( I thought) put in on Dec 1,2011. A man not from Boston Scientific but from St. Jude was there. Says you are getting a whole new model. They had already started they anethesia, I wasn't going too far. Woke up with the battery pack right at my waist line. Noone came back to tell me how to use, charge, anything. January I sat down in a chair and had to move the internal box with my bare hands to sit back. Got to the point it started shocking me if it moved out of it cubby hole. Then it wouldn't shut off and started shocking me. I had it removed on May 14. My heart stopped in the recovery room 2 times due to the shocking it had done to my system. Good luck to all they work for I am happy you are blessed to have them work. Just not for me.
Hello!
Oh My! To think that some places treat their patients this way! How awful. I'm so sorry you had this experience and that you were not well-informed at all regarding the manufacturer of the unit they 'surprised' you with and then placing the battery in such an inconvenient area.

Sounds like some negligence was involved in this also. What a raw deal.
I hope you are recovered from all of this by now.

Thank you for sharing. Definitely an opener!

Rae
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Old 09-04-2012, 11:46 AM #28
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Default Disheartened!

I had the SCS implanted almost a year ago Nov 2011. The clinical trial wasn't a very good way to assess it because you're so restricted. It seemed to help though so I went forward. Three months out I began having pain in my mid back. I originally decided to go with the SCS because of chronic pain in my lower back and legs for over nine years resulting from an auto accident. I have been on Fentanyl patches, oral morphine and lortab (all at one time) on a daily basis the past nine years. I wanted desperately to not have pain and be off medications at least partially! I wanted to feel normal.

Three months I began to have pain and ignored it because I thought my body was adjusting. after a couple months I believe around five months after surgery the pain was becoming more intense and was daily and now now overshadowing the lumbar pain I have had for the past nine years.
Somewhere around month 8 in July of this year I was on the floor cleaning up an apply juice spill and when I went to get up I felt a burning and sharp pain at the surgical site and a hot, sharp intense pain around my rib. Almost like someone had just taken a knife and sliced around my rib very quickly. After that day the pain was so intense my meds increased and my mobility decreased. Then on some days I dont'know what it is I do but perhaps some form of movement? bending over? whatever causes it I don't know but suddenly my hands up to my elbows go numb and tingle just a bit and my feet up to my knees will go numb. The length of these episodes vary the longest being around nine hours. When this happens the pain is decreased. There is a weakness in my feet and hands when they are numb and I've fallen once during one of these times. When it passes the pain increases in intensity and it's back to the same old story.

I do not know what has happened but at this point I'm ready for removal. I've simply added a new level of pain to my life as if the original lower back pain wasn't enough!! There are days the pain is so much so that I sit and cry till I fall asleep. It has brought me to such a place of depression and hopelessness unable to enjoy my life. It's taken what little sense of worth I had as a mother and wife having so much pain, being a burden on my family and not being able to pull my own weight around the house.

I called my surgeon but they referred me to boston scientific and I"m waiting for a call from them which I have not yet received.
I'm praying and hoping for the best.
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Old 09-04-2012, 12:33 PM #29
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Default "Other Issues"

So in my voting I selected both "Worked well" and "Worked somewhat" which obviously contradict - so I added, "I'll tell ya about it in a post"!

Basically, my wiz-bang, high-tech Medtronic ActiveStim system is only 19 days in and at first it was ROCKING with wonderful performance and pain relief - then it started "stuttering" (well, it was doing it from the beginning but it has gotten MUCH worse) where it would sometimes push full power then it would just mysteriously drop, then back up, then down, up-down-up....etc. I'm not moving, not changing my breathing, nothing....it just stutters. Now at almost 3 weeks I see my Rep tomorrow morning and I'm not letting him off the hook this time...he's either going to call the pulse-generator defective and start whatever process he needs to get this fully analysed (or whatever) or he's going to have a GOOD explanation as to why this is happening. With it getting worse I really suspect the PGen is really bad and I'm looking at another surgery. I'll do it in a heartbeat because of the relief I got but...I'm not very amused.
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Old 09-05-2012, 12:20 AM #30
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Quote:
Originally Posted by tkherron1@insightbb View Post
I had the SCS implanted almost a year ago Nov 2011. The clinical trial wasn't a very good way to assess it because you're so restricted. It seemed to help though so I went forward. Three months out I began having pain in my mid back. I originally decided to go with the SCS because of chronic pain in my lower back and legs for over nine years resulting from an auto accident. I have been on Fentanyl patches, oral morphine and lortab (all at one time) on a daily basis the past nine years. I wanted desperately to not have pain and be off medications at least partially! I wanted to feel normal.

Three months I began to have pain and ignored it because I thought my body was adjusting. after a couple months I believe around five months after surgery the pain was becoming more intense and was daily and now now overshadowing the lumbar pain I have had for the past nine years.
Somewhere around month 8 in July of this year I was on the floor cleaning up an apply juice spill and when I went to get up I felt a burning and sharp pain at the surgical site and a hot, sharp intense pain around my rib. Almost like someone had just taken a knife and sliced around my rib very quickly. After that day the pain was so intense my meds increased and my mobility decreased. Then on some days I dont'know what it is I do but perhaps some form of movement? bending over? whatever causes it I don't know but suddenly my hands up to my elbows go numb and tingle just a bit and my feet up to my knees will go numb. The length of these episodes vary the longest being around nine hours. When this happens the pain is decreased. There is a weakness in my feet and hands when they are numb and I've fallen once during one of these times. When it passes the pain increases in intensity and it's back to the same old story.

I do not know what has happened but at this point I'm ready for removal. I've simply added a new level of pain to my life as if the original lower back pain wasn't enough!! There are days the pain is so much so that I sit and cry till I fall asleep. It has brought me to such a place of depression and hopelessness unable to enjoy my life. It's taken what little sense of worth I had as a mother and wife having so much pain, being a burden on my family and not being able to pull my own weight around the house.

I called my surgeon but they referred me to boston scientific and I"m waiting for a call from them which I have not yet received.
I'm praying and hoping for the best.
I just wanted to say thank you for sharing this. I'm so very sorry you've been thru all of this.
I see you've posted down below, so I'll post on the thread you are at.

Again, thanks for this

Rae
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