[Allwrightann]

Hello again. Any one use an scs that can run to both upper and lower extremities? Just talked to my anesthesia pain doc who said we can trial that. Of course he's not the neurosurgeon. Also any opinions on whether the surgeon would want to do it while I have these lyme bartonella and cmv virus? The pain is raging burning electrical so would love some input

[Rimbanda]

Originally Posted by Allwrightann

Hello again. Any one use an scs that can run to both upper and lower extremities? Just talked to my anesthesia pain doc who said we can trial that. Of course he's not the neurosurgeon. Also any opinions on whether the surgeon would want to do it while I have these lyme bartonella and cmv virus? The pain is raging burning electrical so would love some input

I think this would be possible depending on the unit used. Was talking to my Nevro Rep about using SCS for long term sciatica problems and she said that my PM specialist could run one wire up to my neck and one wire for my hip, so I'm assuming that means it is possible to do what you ask. But I've only been looking into these gadgets for a short time, so one of the long term residents might have a more definitive answer for you.

Phil

[JustAnotherVet]

First off, yes my SCS can stimulate from my shoulders to my toes. It took trial and error on my remote to reach my toes.

Now the whole story:
I had a single SCS implanted with contacts at the top on my spine April 9 2014. The remote control has 3 settings and 3 contacts/programs. The stimulator settings:

Amplitude mA (milliamps) = 0.0 to around 30. The main screen for turning up/down Intensity is just a different method of measuring Amplitude.
Pulse Width us (as in micro seconds) = 20 to 1000
Rate Hz (hertz) = 5 to 120 (??)

WikiPedia has some useful information on the settings.
On wikipedia for Spinal_cord_stimulator:
Programming involves selecting the electrode stimulating configuration, adjusting the amplitude, width and frequency of electrical pulses. Amplitude indicates the intensity of stimulation. This is delivered in milliamperes or volts depending on the system used. Lower voltage or current is chosen for peripheral nerves and paddle leads. Pulse width usually varies from 100 to 400 us. Widening the pulse width will also broaden the area of paraesthesia. Frequency of pulse wave is usually between 20 and 120 hertz. It is an individual preference: some patients choose low frequency beating sensation whereas others prefer high frequency buzzing.[13]

I have advanced secondary Raynaud's phenomenon (RP). RP's effect on my toes were one of the main reasons I got the SCS. My brain controlling my toes "thinks" the toes are hot, especially when the toes are cold. 'Cold' for my toes is under 82 degrees Fahrenheit. When the toes are in a cold environment, the corpuscles in the toes tighten to restrict blood going to the toe's tissue. That hurts. It hurts a lot because blood and oxygen are cut off from the toes. The toes temperature can then be felt by other people touching them, the temp is cold like a milk jug in the refrigerator. I have had gangrene on two toes due to RP. Thank God I live in South Florida, although air conditioned buildings open a new problem. I am a Software Engineer. Most commercial software companies keep their office building at around 72 degrees. When I have a Raynaud's attack I "get the stupids"- my brain can't think straight.

Unfortunately, there is not a map in the SCS manual with the settings of how to reach different areas of the body. I had to experiment, especially when I was under RP attack and was pretty dumb. It took a while to get everything right for my issues.

For the SCS's pulse to reach my toes, I generally use two possible settings.
MY NORMAL SETTINGS:
Amplitude = 1.9 mA or 14.9% Intensity
Pulse Width = 940 to 1000
Rate = 20 or 30

To some extent prevent the corpuscles do not tighten as much with the above settings. RP's mechanism is confusing, but apparently the pulses prevent my brain from completely tightening the corpuscles, and then the toes don't tell my brain they as hot, etc - I am not positive on the why. Also with these settings, my biceps have a slight vibration.

MY SETTING WHEN UNDER RP ATTACK:
Amplitude = 3.2 mA or 25.1% Intensity
Pulse Width = 1000
Rate = 20

At the above settings I will feel a strong thump in my toes every second or so. I feel it, but nobody else can hear it, although I am shaking over my entire body much like Andrew J. Fox. My arms are shaking and unable to type on a keyboard with any accuracy. If I recognize I am having an RP attack and use the above setting immediately I can lessen the duration of the RP attack, the additional problems, and most pain in my toes. If the stupids slow my reaction to an RP attack, sometimes by 10 minutes, the only benefit I will get from using the high settings is no pain from the toes.

I am still learning various tweaks for different uses, but the Boston Scientific SCS has given me better life. Zero doubt about that.

Andy

[eva5667faliure]

Originally Posted by JustAnotherVet

First off, yes my SCS can stimulate from my shoulders to my toes. It took trial and error on my remote to reach my toes.

Now the whole story:
I had a single SCS implanted with contacts at the top on my spine April 9 2014. The remote control has 3 settings and 3 contacts/programs. The stimulator settings:

Amplitude mA (milliamps) = 0.0 to around 30. The main screen for turning up/down Intensity is just a different method of measuring Amplitude.
Pulse Width us (as in micro seconds) = 20 to 1000
Rate Hz (hertz) = 5 to 120 (??)

WikiPedia has some useful information on the settings.
On wikipedia for Spinal_cord_stimulator:
Programming involves selecting the electrode stimulating configuration, adjusting the amplitude, width and frequency of electrical pulses. Amplitude indicates the intensity of stimulation. This is delivered in milliamperes or volts depending on the system used. Lower voltage or current is chosen for peripheral nerves and paddle leads. Pulse width usually varies from 100 to 400 us. Widening the pulse width will also broaden the area of paraesthesia. Frequency of pulse wave is usually between 20 and 120 hertz. It is an individual preference: some patients choose low frequency beating sensation whereas others prefer high frequency buzzing.[13]

I have advanced secondary Raynaud's phenomenon (RP). RP's effect on my toes were one of the main reasons I got the SCS. My brain controlling my toes "thinks" the toes are hot, especially when the toes are cold. 'Cold' for my toes is under 82 degrees Fahrenheit. When the toes are in a cold environment, the corpuscles in the toes tighten to restrict blood going to the toe's tissue. That hurts. It hurts a lot because blood and oxygen are cut off from the toes. The toes temperature can then be felt by other people touching them, the temp is cold like a milk jug in the refrigerator. I have had gangrene on two toes due to RP. Thank God I live in South Florida, although air conditioned buildings open a new problem. I am a Software Engineer. Most commercial software companies keep their office building at around 72 degrees. When I have a Raynaud's attack I "get the stupids"- my brain can't think straight.

Unfortunately, there is not a map in the SCS manual with the settings of how to reach different areas of the body. I had to experiment, especially when I was under RP attack and was pretty dumb. It took a while to get everything right for my issues.

For the SCS's pulse to reach my toes, I generally use two possible settings.
MY NORMAL SETTINGS:
Amplitude = 1.9 mA or 14.9% Intensity
Pulse Width = 940 to 1000
Rate = 20 or 30

To some extent prevent the corpuscles do not tighten as much with the above settings. RP's mechanism is confusing, but apparently the pulses prevent my brain from completely tightening the corpuscles, and then the toes don't tell my brain they as hot, etc - I am not positive on the why. Also with these settings, my biceps have a slight vibration.

MY SETTING WHEN UNDER RP ATTACK:
Amplitude = 3.2 mA or 25.1% Intensity
Pulse Width = 1000
Rate = 20

At the above settings I will feel a strong thump in my toes every second or so. I feel it, but nobody else can hear it, although I am shaking over my entire body much like Andrew J. Fox. My arms are shaking and unable to type on a keyboard with any accuracy. If I recognize I am having an RP attack and use the above setting immediately I can lessen the duration of the RP attack, the additional problems, and most pain in my toes. If the stupids slow my reaction to an RP attack, sometimes by 10 minutes, the only benefit I will get from using the high settings is no pain from the toes.

I am still learning various tweaks for different uses, but the Boston Scientific SCS has given me better life. Zero doubt about that.

Andy

Awesome intricate details
This valuable for some
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Me

[Hannabananna]

Hi Andy,
Thanks for the understanding....I am going to get out my remote and booklet...play a little.

welcome aboard...I look forward to your posts.

I am S FL too...east coast

HB

"the Stupids"...what a great name for it.....I get them if I lapse in my pain meds

[ger715]

Andy,

Sound like you have really applied most possibilities. At the time of my trial my doctor said there was nothing at that time to accommodate the spine down to the toes (which are the areas I have the worst pain). He said this will eventually be available but not at this time.

Many posters have accomplished getting multiple areas with twin (two) SCS's; one for upper body and one for lower body.

Appreciate your input.


Gerry

[Allwrightann]

Andy and all. Thanks so much for your input. I had a Medtronic trial for just my arms in dec 2013 and the intensity of the vibration to control the higher pain levels were really getting to be disturbing. I did not go ahead with the implant because then I was dx with lyme and Bart and it was believed to help the neuropathy. Now we know that's not true it's full body. Now pain doc says he can try a different device and run the leads up and down my spine like the other poster says. Might as well try it I guess. Bit with active infections I wonder if neurosurgeon would be willing to do the surgery? Any opinions please.

[JustAnotherVet]

I love my Boston Scientific SCS. I am still tweaking my programs, having this baby has given me so much already I can’t begin to grasp all the possibilities. I named my implant Igor. It is pronounced ‘eye-gor’, in deference to Marty Feldman’s role in “Young Frankenstein”. You see, I have this little hump on my back now . Sometimes I misplace my remote until my wife yells, “I found Igor!” and returns it to my loving hands.

As far as SCS infections:
I found a report on SCS infections on the web when I got an infection 10 days post implant. If I can find the report I will post it here. During the trial most infections occur AFTER 3 days, so only do the trial for 3 days OR take pre-emptive antibiotics. Following the real SCS implant, the most likely time for an infection is 10 days. The most likely bacteria for both cases is s.aureus, a fairly common bacteria that might not require antibiotics under normal circumstances because your immune system should handle it, but invading the spinal column’s fluid has risks that must be prevented ASAP. The bacteria I had after 10 days was found to be s.aureus. Because that bacteria is so common for SCS patients, I suspect that if the SCS companies investigated infected patients they would find an obvious flaw in the sterilization of the SCS in the factory or during implant.

The SCS trials last 5 to 7 days. The doctors listen to the SCS salesman who want the trial for that timeframe to make sure the patient will keep the SCS. As strange as it may seem to a person who has an SCS and is thrilled with it, some people look at their SCS as an invading monster, get freaked out, and want it the thing removed. That’s costly for the manufacturer (no ‘legal’ restocking fee), so they want the patient to test it longer than I think is needed.

I would not recommend having the Medtronic for the implant. The Medtronic for the trial might be OK. The trial and the implant are different anyway. The Medtronic has significant problems, like battery leakage inside the patient, device twisting around inside the patient, and broken leads. SCS ‘spam’ complaints on the web are sometimes from competing salesmen from other manufacturers, very sleazy, but if you google and read enough complaints you will become aware of completely identical postings all over the web with minor differences in dates or areas of the country; those SOBs should be sentenced to prisons where they don’t allow Vaseline for inmates . I spent days researching which SCS I wanted. Boston Scientific (can’t use their initials ) is by far the best SCS for now, but newer and smaller SCS devices are coming to market. I am not affiliated with Boston Scientific or any other SCS company, I am a medically experienced severely Disabled Veteran. I am “medically experienced” because I spent more than one year as a patient in various military hospitals, so I had to learn. I spent a huge amount of time investigating which SCS was best FOR THIS MOMENT for me. When my wife is ready for her SCS I will spend days investigating what is best AT THAT TIME for her. I WILL NOT tell her to get a Boston Scientific SCS just because I did.

You may not be able to get your current doctor to use the device you want (they get a percentage $$), but you can change to a doctor who will!

Good luck! Let me know if you have any questions about my SCS experience.
Andy

[chrelsey]

I just wanted to respond to what Andy posted about the Medtronic's unit.

I'm sure that there are both good and bad experiences that can be found when it comes to all of the different brands of SCS units that are out there, and good and defective units for each as well. Before I got my unit, I, too, researched, and again, found good, bad, and scary things on every one of them.

Having said that, I do have a Medtronic's unit, and while I had to have revision surgery because my leads migrated and I needed the paddle/laminectomy instead, I have been very happy with the unit, my battery, and the coverage that it gives me. Before the leads migrated after my original surgery, I was getting 60-75% pain relief. My paddle/laminectomy surgery was two weeks ago today, and my unit was just turned on at my post-op appointment two days ago. Because we won't be able to really begin tweaking my settings until the swelling goes down more, I won't know how the paddle leads compare, percentage-wise, to the percutaneous leads - but having had such good coverage before the lead migration, I am hoping for the same.

All of that to say, I agree with Andy - research and find which one is best for you. But in doing so, bear in mind that you will find success - and horror stories - for all of the devices. I, personally, would not specifically call out one company as being worse than another, but we all have different opinions and experiences, and there is nothing wrong with that. Sharing those differing thoughts and opinions is so valuable, as everyone's experiences can hopefully - collectively - help us all.

Andy - I am VERY glad to hear that your SCS has been so successful for you! Any time that any one of us can calm this beast down even the slightest amount - it is a victory. And, being a huge "Young Frankenstein" fan (I can quote the entire movie!), I love what you have named your implant!

Wishing everyone the best as we all move forward on our journeys!

=Becky

[ger715]

Becky,

Glad you now have your unit on. Looking forward to hearing the outcome once the unit is tweaked. Hopefully your coverage will be at least as good, if not better, than the previous one did before migration.

At least the paddle does not appear to migrate. From what I have read, seems leads are prone to migration which the area is no longer covered; possibly causing additional pain because the leads are not where intended. The paddle, while being more invasive does not seem as prone to migration resulting in more positive results.



Gerry