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St. Jude spinal cord stimulator... is this working?

Hello. I had a Boston Scientific implantable spinal cord stimulator and just 2 weeks ago had that taken out and a St Jude one replaced it. However I am still in pain. 

I have always had a very deep ache pain in my legs. Like you get the flu, your body aches, well that times a thousand! That is what I experience in my legs, front and back. I also have nerve pain in the back of my legs into both feet. I have not felt the nerve pain, but my ache pain has gotten so much more worse!! 

Is it because the nerve pain overshadowed the ache pain and now that the nerve pain is under control I feel the ache more? The ache is so bad it affects my walking. 

I do have permanent nerve damage in both legs. I have failed back syndrome along with a hundred more issues from a very botched spinal fusion in '08. 

Also the nerve pain in my feet, especially around the ankles is still severe. 

I met with the rep Wednesday, she put me on program 2 which she created there with me. I had so much hope. But now I'm disappointed. 

At least with the old stimulator I could feel it and it was like a massage. I'm sure it also had a psychological effect as well. 

If anyone can give me guidance I'd appreciate it immensely!!!

Veronica 

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Comments

  • Go back to your rep and and demand they give you multiple programs so that you can alternate depending on where the pain is coming from.  If that means they have to reprogram more frequently than most folks need, but you need to be able to use the device to its fullest.  Some people say the device never helped them.  I feel that the device, if implanted correctly and programmed correctly, can help almost everyone.

    I know St Jude is very proud of their Burst technology.  For most people, they love that they can't feel the stimulation.  For myself, I WANT to feel it.  I've only done the trial, but hubby has had his for years.  I'm likely going to get one implanted within the next year.  I'd love to get off the pain medications.

  • I have one of the competitor devices that also runs in a non-paresthesia mode.  My leads are placed in my high cervical area, right below the base of my brain.  I don't want to feel it.  I do feel the benefit.  I have had a dramatic improvement in quality of life.  My device can be re-programed to feel paresthesia (tingling) to find the proper settings.

    Please "push back" on your hardware rep.  As my neurosurgeon said that did the SCS implant, getting them to work is often a trial and error process.  He also said that unfortunately, there are some of his patients they lose the benefit of the neurostimulation after a period of time.

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  • jbowerjbower wisconsin Posts: 170

    Does this new one even have an option to feel the stimulation?  I know the Nevro doesn't have an option to feel it.  I have the medtronic stimulator and there are two options.  One I can feel and one I can't.  But I have a couple options to hit different spots.  Personally I like to be able to feel it.  Until I try to play with my boys because then the stimulation hits too hard and stops me in the spot.

    I have let the battery die out so many times and when that happens I feel like I have restless leg syndrome.  So I charge it right away.  I did habe one instance where I let it sit for a week because I forgot to bring the charger on a trip.  After we got back I wasn't able to charge it and had to see one of the reps to reset the stimulator.

    I was talking to the rep about all my issues and how no one will help me. I started having thoracic pain really bad after the stimulator surgery.  The surgeon that did it only uses what they call a paddle to connect the leads too.  He says he likes it because it gives a higher chance that the leads won't move.  So the put it close to the spinal column and let the scar tissue build around it to hold it in place.

    Anyways, he won't remove it until it hits the 10 year mark or it gets compromised.  The rep said that since I let it die once that if it happens again then they have to change it out because the battery is only 50% good.  She said you didn't hear that from me but it's an option if I want to have them remove the paddle. The new ones have a different charging system, the battery hold a longer charge and they are MRI compatible which mine isn't.  Some surgeon won't even bother with me unless I can have an MRI done. I've had a CT scan with dye but they want to see if they can find more with the mri scan.  

    Maybe I'll let that happen, I'm not sure.

  • jbower - I know that Nevro pushes the "paresthesia free" option with their devices.  I thought that I read that a Nevro user was finally able to get them to reduce the frequency so that the patient could feel the treatment location.  That patient went on to say that Nevro "dragged their feet" in activating the paresthesia mode but finally did after many persistent calls.  I might vary with the particular Nevro model that you have installed.  I'd think it would be worth a try to "bug them".  If your hardware rep is not responsive, I'd try calling the support number, multiple times.

  • jbowerjbower wisconsin Posts: 170

    Stiffneck7 I have the medtronic stimulator so I can feel mine. Or I can change the settings where I can't feel it.  What I am thinking is asking my doctor if they can remove the stimulator and paddle.  I found some interesting articles online where patients were having the same issue I was where the paddle was implanted in the thoracic area.  They started getting more and more pain in the thoracic spine.

    It got to the point where they requested to take it out.  So the doctor removed the paddle and scraped out the scar tissue in that area and the thoracic pain was gone.

    I have a pump refill appointment on Thursday so I am going to ask about it and see if they will remove it.  As mentioned the original doctor that put it in won't remove the paddle which I think is stupid because if I want it removed then he should remove it. Hopefully my pain management doctor will remove it as they do implant stimulators there so we'll see.

    If it gives me the chance to get my life back by removing this then I will take it.  We'll see what they say on Thursday.

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