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Spinal cord stimulator implanted .

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2 years 9 months ago #23098 by illeatyu
illeatyu replied the topic: Spinal cord stimulator implanted .
Carissa,

Don't be sorry about complaining, whether the pain level is huge or tiny its still constant and that will drive you nuts, just ask me I went there enjoyed the view and stayed.

If its something that affects your quality of life then you have every right to be upset over it, and yes if you are correct and this is the price you pay then do a good VS bad table with pain meds and no twitch, and with no pain meds and with Twitch, I would lay money that the latter wins.

Anyway good luck and Maybe its a transitionary things while your body gets used to the Stim.

Illeatyu

“All the elements in your body were forged many, many millions of years ago, in the heart of a far away star that exploded and died. That explosion scattered those elements across the desolations of deep space. And came together to form you, you are unique in the universe.
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2 years 9 months ago #23101 by grappers
grappers replied the topic: Spinal cord stimulator implanted .
Hi Carissa,
I had twitches before having the stim implanted, it hasn't been any worse since, what I do get is like a whole body twitch in a sort of way, but this is because of lack of sleep, more like a little micro sleep that causes me to jerk out of, they happen any time during the day, but they happen more when I get the less amount of sleep, this winter has been bad for them, as pain levels increased with the cold.
How many adjustments to the program have you had done? do you have more than one program to choose from? I ask this because I was told by my tech that having just one program limits the usefulness of the stim over time, and your body gets use to the one stimulation, I have 8 programs which to choose from, which are tinkled with every 6 months, the most common one cycles between off and on during the day, on for 20 secs off for 15 secs, it going off doesn't affect an increase in pain levels at all, it allows a longer battery life between charging.
Sleep or lack off was a big problem before getting my stim, I was lucky to get 4 hrs over a 4 day period, sleep is better since the implant, but no where near having normal sleep patterns, as it has to be turned down at night or get zapped, as the leads lay closer to the nerves in a laying down position.
In a way it is a bit of a trade off, but what are the other options, drugs which cause serious side effects, and less quality of life, having neither and putting up with no sleep and unbearable pain, I willing to put up with a little less sleep if pain is reduced, I don't listen to the sleep hygiene mantra, as I firmly believe it doesn't apply to chronic pain patients, because you can't sleep when in pain, so if I want to go have a ly down to get a few zees during the day, then that is what I will do, getting a good 6-8 hrs of solid sleep disappeared once pain got involved, no amount of sleep hygiene practice will bring it back. they say wake at the same time, go to bed at the same time, don't take naps, but pain doesn't play by those rules.
When in bed I can only sleep on my back, with my knees bent, aided by a triangle piece of foam I had specially cut, in this position it takes pressure off my back, making sleep a little better, but I also suffer bad cramps at night which also keep me awake.

Don
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2 years 4 months ago #24365 by Carissa
Carissa replied the topic: Spinal cord stimulator implanted .
Hi Guys

I hope you are all doing as well as possible, I haven't logged anything for months but have been reading everyone posts keeping up with how everyone is.

I'm wanting to ask for opinions from those of you who have had the spinal chord stimulator implant for longer than 6 months.

My stim has been giving me brilliant coverage for the past six months and has changed my life, ongoing pain at the site of the battery has resulted in surgeon deciding it needs to be moved either deeper under muscle in buttock or into stomach so I am on waiting list for this.

My question though is that for over a week now I have had extreme back pain, it is basically from my bra strap all the way down to my tail bone but seems to be worse right in the middle just below bra right on spine. From what I know that is where the leads are for implant, I went to my dr and he wasn't really concerned and prescribed anti inflammatory tablets. I'm already taking endone for the battery pain but the back pain is breaking through this.

I'm not sure if I have done something to my back or if I should be concerned that it is something to do with the implant, my dr has been with me through through all of the surgeries but his knowledge about the stimulator is pretty limited. My stimulator is still working and has not been affected at all, it is for my leg not back.

I don't know wether to just keep taking the anti inflammatory tablets and give it time like my dr said or if I should be contacting the implant people. The pain has been constant for a week now and hasn't chanaged at all it's pretty full on and I, used to a pretty high level of pain, any advice you could offer would be really appreciated. Thankyou x

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2 years 4 months ago #24377 by grappers
grappers replied the topic: Spinal cord stimulator implanted .
Hi Carissa,
The site where they implanted the leads I can't see as the problem to your current pain in that region, as the only they make a small incision to insert the leads, and a couple of dissolving stitches the hold them in place until scar tissue does the job properly, but saying that I would make an appointment with the surgeon who did the implant just to be on the safe side, any concerns I have we my stim I always speak to my surgeon, they don't mind, even if it is nothing but me being over concerned.
When I first had the battery implanted it caused a bit of discomfort, I had a fluid build up around the implant, that bursted after a month and felt like a rush of water running down the inside, it also hurt like hell when it popped, my battery is very close the surface, actually sticks out, I tend to knock it on bench tops, get it caught in some open back chairs.
My stim has never covered my back pain, like you mine covers my legs and buttocks well, reprogramming has tried to get my back covered, but failed, unless I get the leads moved which would then lose cover in the leg area.

Don

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1 year 10 months ago #25539 by Carissa
Carissa replied the topic: Spinal cord stimulator implanted .
Hi guys,

I haven't posted in months but I'm hoping you can help answer a question.

In about a month I'm having another surgery to move my battery from buttock to stomach, it's been giving me hell for the past 6 months and they have decided its too close to the surface and needs to be moved.

I've also been having a lot of back pain which I have had my whole life to some degree but nothing like what it is now. What I am wondering is can the SCS be programmed to cover back and leg if they are going in to move the battery when it was only implanted to cover leg ? And if so will this mean I loose some coverage of the leg which is what my implant is for?

Don I know you mentioned in your response ages ago that you had tried this but with no success if you don't mind would you share your experience with me ? I don't want to ask the programmers to do it if I'm going to loose coverage to my leg as I can't go back to that pain again.

Thankyou guys I hope you are having as pain free of a day as possible xx

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1 year 10 months ago #25616 by bluerob
bluerob replied the topic: Spinal cord stimulator implanted .

Carissa wrote: Hi guys,

I haven't posted in months but I'm hoping you can help answer a question.

In about a month I'm having another surgery to move my battery from buttock to stomach, it's been giving me hell for the past 6 months and they have decided its too close to the surface and needs to be moved.

I've also been having a lot of back pain which I have had my whole life to some degree but nothing like what it is now. What I am wondering is can the SCS be programmed to cover back and leg if they are going in to move the battery when it was only implanted to cover leg ? And if so will this mean I loose some coverage of the leg which is what my implant is for?

Don I know you mentioned in your response ages ago that you had tried this but with no success if you don't mind would you share your experience with me ? I don't want to ask the programmers to do it if I'm going to loose coverage to my leg as I can't go back to that pain again.

Thankyou guys I hope you are having as pain free of a day as possible xx


Carissa,

Have you heard anything further about your issues?

I trilalled a 2 lead implant (I had to go back every day for programming as it wasn't working and was removed after 9 days).

My PM specialist wants me to trial a 4 lead device, which was about 2 months ago now. I have private health (supposed to be the best available for a single guy) and I'm still waiting to hear from my doctors.
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