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


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Old 10-13-2017, 06:08 PM #21
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PamelaJune PamelaJune is offline
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PamelaJune PamelaJune is offline
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Join Date: Dec 2013
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Aus have had the use of Nevro for longer than the US, FDA took longer to approve it, not sure why. I've had my Nevro since Dec 2013, I've had a number of ups and downs along the way with it. The Aus reps I'm told assisted with the training of the US reps. All our Aus reps have had previous working life exp in nursing / medical / physiology and I've found them to be marvellous. My rep contacts me every 6 months, yep even after all this time.

Recently in July I was admitted to emergency early morning for severe pain, complete inability to walk. I accidentally left my Remote at home, panicking I texted my rep asked if she or any of the others were in the vicinity of where I was could someone come in and turn it off as they wanted to do a CT scan. As it turned out she was across the other side of the city & in peak hour, she jumped in her car, came straight to emergency, explained at reception who she was & was bought through immediately. My husband was blown away when she pulled out her laptop, logged on, verified all that had happened on my stim in the last 24 hrs, its charge level & when I last charged etc and then she turned it off. She proceeded to sit and talk with us both for another 20 minutes or so to see if there would be benefits to her returning & retweaking my program once I'd had the CT. They were giving me morphine to control the pain & of course once the stim turned off the pain went from what I was saying 10/10 to 20/10. We determined the stim was doing what it could in the level it was set at & this pain a complete new issue. Since then I've had to have major spine surgery again - a Retroperitoneal Anterior Lumbar Interbody Fusion, I've been in hospital now for 3 weeks. My rep has kept in contact with me the entire time, her commitment to her job (& her colleagues) is so very unlike reps I hear of from other brands & yes, I do liken them to car sales reps or insurance sales reps. Deal done see ya... I think my rep deserves employee of the year!! I've texted & spoken to her direct line Manager.

John over the years I've trialled each amplitude, program etc & I've found the lower the setting, the better coverage. Mine is set now for fixed upper back coverage if in P3 but I can play with P 1, 2 & 3 levels 1 thru 7 as I desire. I can change from fixed upper by dropping it back to P2. I have for the last 8 months kept it on amp 2, P1 level 6 or 7 & for my thoracic pain it has kept it well under control. My Lumbar is stuffed now with this new surgery & will likely require new programming. I might go for fixed Lumbar & option to change thoracic. Not sure why both can't be programmed to be fixed, suspect it has to do with number of leads & points. I have 2 leads 16 points. But, I'm not a tech person so I could be talking out of my butt!

Quote:
Originally Posted by John Nevro User View Post
SOmething I don't understand here. The Nevro Implant outputs at 10K Hz. (That's 10,000 vibrations per second) Amplitide does not increase with frequency, which is why the Nevro Implant Operates at this frequency. The only control you have are 3 level of amplitude, and within those levels, 6 minor adjustments of the amplitude (more milli-amps) in incremental steps. Each step can greatly alter you reaction, take it slowly. I have had my implant in for a year. The inside arch of my feet were beginning to atrophy, and itched so bad, I scratched them with implement s till they bled. The Nevro implant has removed that sensation. I can now walk far better and the atrophy/neurapathy, has reversed. I do not allow them to program the "On/Off" duty cycles. My pain is constant, and this type of cycling caused too much pain. My implant is set at the factory standard, I usually run it on the second to the lowest setting. At times, for a day or two, I run it at the highest setting when my legs are "on fire".

It's may be different for different conditions, but I do believe there is a common ground. I wish Nevro would release to it's patients empirical studies so we could find ourselves, compare, and use our minds and stop fumbling, and use this data to our advantage. People in pain seem to be more involved in their care, and are seekers of knowledge. We need this information. IMHO.
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Old 10-14-2017, 11:03 PM #22
John Nevro User John Nevro User is offline
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Quote:
Originally Posted by PamelaJune View Post
Aus have had the use of Nevro for longer than the US, FDA took longer to approve it, not sure why. I've had my Nevro since Dec 2013, I've had a number of ups and downs along the way with it. The Aus reps I'm told assisted with the training of the US reps. All our Aus reps have had previous working life exp in nursing / medical / physiology and I've found them to be marvellous. My rep contacts me every 6 months, yep even after all this time.

Recently in July I was admitted to emergency early morning for severe pain, complete inability to walk. I accidentally left my Remote at home, panicking I texted my rep asked if she or any of the others were in the vicinity of where I was could someone come in and turn it off as they wanted to do a CT scan. As it turned out she was across the other side of the city & in peak hour, she jumped in her car, came straight to emergency, explained at reception who she was & was bought through immediately. My husband was blown away when she pulled out her laptop, logged on, verified all that had happened on my stim in the last 24 hrs, its charge level & when I last charged etc and then she turned it off. She proceeded to sit and talk with us both for another 20 minutes or so to see if there would be benefits to her returning & retweaking my program once I'd had the CT. They were giving me morphine to control the pain & of course once the stim turned off the pain went from what I was saying 10/10 to 20/10. We determined the stim was doing what it could in the level it was set at & this pain a complete new issue. Since then I've had to have major spine surgery again - a Retroperitoneal Anterior Lumbar Interbody Fusion, I've been in hospital now for 3 weeks. My rep has kept in contact with me the entire time, her commitment to her job (& her colleagues) is so very unlike reps I hear of from other brands & yes, I do liken them to car sales reps or insurance sales reps. Deal done see ya... I think my rep deserves employee of the year!! I've texted & spoken to her direct line Manager.

John over the years I've trialled each amplitude, program etc & I've found the lower the setting, the better coverage. Mine is set now for fixed upper back coverage if in P3 but I can play with P 1, 2 & 3 levels 1 thru 7 as I desire. I can change from fixed upper by dropping it back to P2. I have for the last 8 months kept it on amp 2, P1 level 6 or 7 & for my thoracic pain it has kept it well under control. My Lumbar is stuffed now with this new surgery & will likely require new programming. I might go for fixed Lumbar & option to change thoracic. Not sure why both can't be programmed to be fixed, suspect it has to do with number of leads & points. I have 2 leads 16 points. But, I'm not a tech person so I could be talking out of my butt!
Wow! That response was so informative, I will be copying and pasting it to a text to further study. I am an Electronic Technician. I fix electronics to component level. The Nevro operates a Sinusoidal alternative frequency waveform at 10K Hertz, 1/Time = 1/Hertz. So that's 10,000 pulses per second. Freqyenct does not increase the strength, the adjustment we have is increasing or lowering the Amplitude. What really interested me about you post is the Thoracic part. I have two inoperable blown Thoracic disc. I get hospitalized when they give me trouble breathing. For my feet, I an on P1, Level 2. That keeps them in check. I will have to try your Thoracic settings just to see. Can you please tell me how much time you have found for this device to make a difference? I know that may be different for everyone, but we are all human, so the difference may not be as great.

I have four Lumbar InteBody cages, with scar tissue wrapped around my Lumbar Spine. The pain will eventually make it almost impossible to walk. I will go as long as I can, "Go not gentle into that good night", right!

Sometimes, I will run it all out, the Highest setting, for around 8 hours. This does tire me but seems to "Zero" out the Implants activity, and the lower settings then again work beter. I have found that 96% of the time, less is mre with this device.. I look forward to conversing with you again. The FDA in America is full of Political Action Committees (PACs) and our government is for the most part, corrupt. The American with Disabilities at is now used as toilet paper.
I love my country, a few consider we disabled to be a drain. I was hurt making weapons of war for the U.S.. Maybe that is why I suffer so, maybe not, maybe it has nothing to do with it. I don't know. I may sound bitter, but I am not. It's just that somehow an Orangutan has been elected president. I would have preferred a Chimp, or Squirrel Monkey, or Kermit, the Frog.
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