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Old 12-11-2010, 09:18 PM #1
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Question Question about reprogramming

Hey there.

I have a question for those of you who have had your SCS for a while and have had a reprogramming already.

I know that the purpose is to change the programs and get something that covers your pain better, etc.

But I am a bit curious about one thing.

In the last three or so days, I have turned my stimulator from 2.3 to 5.1 and am rising several notches each day (it goes up by .1--not sure if all companies are the same).

Now, with my Boston Scientific remote I can change several settings.. not just the level/intensity, which is all I could control during the trial (which was Medtronic). Now I can also control the width and the rate--and maybe something else. I can't remember off hand.. but even though there are only 4 programs, I can change a LOT of different things.

My question is this: Right now I am working my way up to the maximum level/intensity quite quickly. I am thrilled because it is slowly starting to cover some more of my pain. As I increase, the pain is slowly easing up.. not a ton, but a bit. I can't just go up 10 notches immediately... but I can go up every few hours and then it is slowly becoming controllable. So when you go to get reprogrammed, can you be set so that the new program is a stronger/more intense program... or is it a case where, once I hit the top line for these 4 programs, I cannot go up any more?

That doesn't make much sense to me in my mind.. that they would create something with such a low limit. One month after surgery and I am already steadily climbing to the middle of this program. So my hope is that when I need reprogramming, that I will have more options and be able to get more relief once I have reached the maximum for these programs.

Can someone out there clear that up for me? Thanks! Hope everyone is having a great weekend so far and staying warm. We're having a big blizzard, but that is nothing new. Glad I have a warm home to be in.
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♥ "Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before." -Holley Gerth ♥

My name is Sarah and I am 25 years old. I have a lot of chronic health problems. Peripheral neuropathy and POTS (postural orthostatic tachycardia syndrome) keep me bedridden the majority of the time. I also struggle with degenerative disc disease, disc desiccation, spondylolisthesis, arthritis, polycystic ovarian syndrome (PCOS) with insulin resistance, allergies, sound sensitivities, and other health problems.
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Old 12-11-2010, 11:52 PM #2
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Quote:
Originally Posted by smae View Post
Hey there.

I have a question for those of you who have had your SCS for a while and have had a reprogramming already.

I know that the purpose is to change the programs and get something that covers your pain better, etc.

But I am a bit curious about one thing.

In the last three or so days, I have turned my stimulator from 2.3 to 5.1 and am rising several notches each day (it goes up by .1--not sure if all companies are the same).

Now, with my Boston Scientific remote I can change several settings.. not just the level/intensity, which is all I could control during the trial (which was Medtronic). Now I can also control the width and the rate--and maybe something else. I can't remember off hand.. but even though there are only 4 programs, I can change a LOT of different things.

My question is this: Right now I am working my way up to the maximum level/intensity quite quickly. I am thrilled because it is slowly starting to cover some more of my pain. As I increase, the pain is slowly easing up.. not a ton, but a bit. I can't just go up 10 notches immediately... but I can go up every few hours and then it is slowly becoming controllable. So when you go to get reprogrammed, can you be set so that the new program is a stronger/more intense program... or is it a case where, once I hit the top line for these 4 programs, I cannot go up any more?

That doesn't make much sense to me in my mind.. that they would create something with such a low limit. One month after surgery and I am already steadily climbing to the middle of this program. So my hope is that when I need reprogramming, that I will have more options and be able to get more relief once I have reached the maximum for these programs.

Can someone out there clear that up for me? Thanks! Hope everyone is having a great weekend so far and staying warm. We're having a big blizzard, but that is nothing new. Glad I have a warm home to be in.
I just alternate between programs and intensities on my Boston Sci. Small steps usually, and buzz myself up......

Mark56
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Old 12-12-2010, 08:50 AM #3
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Default Hi Sarah

Hi I have had 2 reprogramming sessions since my surgery in August.

Initially when it was put in I had 5 programmes and at the time they would have been 'ok' as regards the buzzing, but after the pain of the operation subsided I felt I could do with a bit more buzzing so to speak.

So at my first session the Rep gave me another programme and this time he changed it that it went from very low, mine is an ANS btw, up to as high as I could take it. This way he said that I could either have it on very low up to very high, or at least as high as my body would allow. So this lasted about 4 weeks when I was called again for another reprogramming. This time my Rep, the lady rep this time, she gave me two more programmes. She devised it that I could change the intensity of the sensations and again she cranked it up as high as I could stand it. But after a day or so I felt a pulling in my stomachwhich I dont like and no amount of tweaking with my settings would take it away, so I dont use those settings either.

I generally only use one now. Well until I can go again for a reprogramming session. The one I have is 'ok'. Again I can higher or lower the intensity and also I can put it up QUITE high. The Rep did say I wasnt hyper-sensitive which was good as it meant I could have the settings quite high and my body didnt react too much. Mind you at times when I do crank it up quite high, my legs jumpwhich is soooo odd....but then that is quite uncomfortable.

So Sarah maybe ring your Rep and ask if like what I have done could be done with yours. I know you have a different one to mine but I would imagine that you must be able to play around with the settings......

My Rep did say to me in the beginning that he would only give me a certain level until I was recovered from the actual operation and also to get me used to the ongoing sensations and whether or not I would need higher buzzing.

Hope that is of some help to you today

Jackie
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Old 12-12-2010, 12:24 PM #4
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Z Sarah, I have "3" programs, basically three different levels of my leads (transducers) that I have a wide range of settings on, I can set the strength of the buzz, the frequency and one other thing. I have found over the years that I can shut it off for short periods of time, but If I do that the pain may come back with a vengance. We have tried to "reach" my siatic nerve with this with no success so I go in about every 3-5 months and have the nerve blocked with depomedrol, lidocaine and a long acting "caine" He has done a duramorph injection, but seems reluctant to do this too much as he fears that I may fall or have loss of my leg with that. As it is I am not to drive for 12 hours after the injection (I usually drive out of Lincoln as my mother does not drive in Lincoln well) and drive the last 40 miles home after the injection, HOWEVER his is injecting my left side, I would not dare to do the driving if it was my right side or if I was driving a stick shift (one of the things that really flares me). So with every reprogram, they try to set things to best control your pain for you! I am glad that you do not have a MEDTRONIC implant as I have not been the happiest camper in recent months with their customer service, HOWEVER when I pointed out to the rep that my friends online seem to have MUCH better customer service with Boston Sci they have been somewhat better, and since I FINALLY got a new recharging unit things have been going better. As you know weather changes suck as well as cold.
z again and tc
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Old 12-20-2010, 06:11 PM #5
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Quote:
Originally Posted by smae View Post
Hey there.

I have a question for those of you who have had your SCS for a while and have had a reprogramming already.

I know that the purpose is to change the programs and get something that covers your pain better, etc.

But I am a bit curious about one thing.

In the last three or so days, I have turned my stimulator from 2.3 to 5.1 and am rising several notches each day (it goes up by .1--not sure if all companies are the same).

Now, with my Boston Scientific remote I can change several settings.. not just the level/intensity, which is all I could control during the trial (which was Medtronic). Now I can also control the width and the rate--and maybe something else. I can't remember off hand.. but even though there are only 4 programs, I can change a LOT of different things.

My question is this: Right now I am working my way up to the maximum level/intensity quite quickly. I am thrilled because it is slowly starting to cover some more of my pain. As I increase, the pain is slowly easing up.. not a ton, but a bit. I can't just go up 10 notches immediately... but I can go up every few hours and then it is slowly becoming controllable. So when you go to get reprogrammed, can you be set so that the new program is a stronger/more intense program... or is it a case where, once I hit the top line for these 4 programs, I cannot go up any more?

That doesn't make much sense to me in my mind.. that they would create something with such a low limit. One month after surgery and I am already steadily climbing to the middle of this program. So my hope is that when I need reprogramming, that I will have more options and be able to get more relief once I have reached the maximum for these programs.

Can someone out there clear that up for me? Thanks! Hope everyone is having a great weekend so far and staying warm. We're having a big blizzard, but that is nothing new. Glad I have a warm home to be in.
I can have as many as 24 programs in my SCS, but don't feel the need to have that many. I think the rep programmed 8 right now, but don't remember right off hand (it was at my 4 day check up post op). I can turn it on/off, switch from program to program and intensity level. The rep told me not to let the battery ever run out totally, not good for it at all. But the battery life is incredible on one charge. And the life overall of the battey is ten years, I was happy about that. I am sick of surgery.
The rep also said that no matter where I go, if we were to ever more or travel and I had a problem they have reps everywhere, I just dial up the number and someone would help me set up an appt. Thats good to know.
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