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Spinal cord stimulator

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2 years 6 months ago #24072 by bluerob
bluerob created the topic: Spinal cord stimulator
Hello and best regards to all.

I hope that your day isn't a crappy one.

Has anyone ever had a spinal cord stimulator implanted?

I know that everyone responds differently, but, I'm interested in your opinion as I've been asked to join a study and I'm unsure as to whether this device is any different to the various sparky toys you can buy (like tens machines and the like).

I bought a tens type device which helped for about 10 mins.

I should mention that I've had a number of surgeries on my spine, I'm considered a maintenance case and not a cure and that I have issues with the structure of my spine. I was supposed to have another Laminectomy next month, but, I've asked the neurosurgeon to postpone until the new year.

I've spent 8 weeks inside this year and thats enough for me. I'd sooner be at home in pain than in hospital in pain (well, I don't get a needle when I'm at home, but, I take enough junk to knock a horse over, according to a PM dude I say last week).

Sorry about the "I" at each sentence beginning.

Cheers

Rob.

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2 years 6 months ago #24073 by grappers
grappers replied the topic: Spinal cord stimulator
Hi Bluerob,
Yes I do have a spinal stimulator implanted, is it different to a tens unit, yes, is the op vary invasive, no, for the trial which I think you are referring to, they will make a small incision where the leads will be inserted into your spinal column, for seven days you will have an external battery pack connect to these leads, with this pack you have control of how strong the impulses are, so you can turn it up or down depending on pain and a comfortable level of pulsing, after seven days the leads are removed, by just withdrawing them, you don't even feel this, the incision is not that big so now need for stitches.
If the trial works well in reducing your pain, then you can go for the full implant, the leads will be placed in the same spot as the trial, except they will channel the leads under the skin to your buttock area, where an internal battery will be placed, this operation is still not very invasive, the cut where the leads are inserted will be slightly bigger, requiring roughly 2 stitches, where the battery is placed requires about 4,
Mine was implanted as a last resort, I can't take medications, any further operations to try and repair the damage have been ruled out because of scar tissue ( too many nerves wrapped up in scar tissue) and bony growths, I hummed and harred about going through with this procedure, mainly because of some negative feedback, but decided to give it a go, best decision I made, it doesn't get rid of all my pain, and I still have bad days, it is better than the 10 plus pain 24/7 I was experiencing, have the trial you have nothing to lose and possible a lot to gain if it works for you, it will not cause any more damage, as they go in above your injury site.

Don
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2 years 6 months ago #24074 by bluerob
bluerob replied the topic: Spinal cord stimulator

grappers wrote: Hi Bluerob,
Yes I do have a spinal stimulator implanted, is it different to a tens unit, yes, is the op vary invasive, no, for the trial which I think you are referring to, they will make a small incision where the leads will be inserted into your spinal column, for seven days you will have an external battery pack connect to these leads, with this pack you have control of how strong the impulses are, so you can turn it up or down depending on pain and a comfortable level of pulsing, after seven days the leads are removed, by just withdrawing them, you don't even feel this, the incision is not that big so now need for stitches.
If the trial works well in reducing your pain, then you can go for the full implant, the leads will be placed in the same spot as the trial, except they will channel the leads under the skin to your buttock area, where an internal battery will be placed, this operation is still not very invasive, the cut where the leads are inserted will be slightly bigger, requiring roughly 2 stitches, where the battery is placed requires about 4,
Mine was implanted as a last resort, I can't take medications, any further operations to try and repair the damage have been ruled out because of scar tissue ( too many nerves wrapped up in scar tissue) and bony growths, I hummed and harred about going through with this procedure, mainly because of some negative feedback, but decided to give it a go, best decision I made, it doesn't get rid of all my pain, and I still have bad days, it is better than the 10 plus pain 24/7 I was experiencing, have the trial you have nothing to lose and possible a lot to gain if it works for you, it will not cause any more damage, as they go in above your injury site.

Don


Don,

Many thanks for your detailed reply. I greatly appreciate it. I attended a concert of my favorite singer on Friday night and nearly fell asleep at the table from the junk. I couldn't take my day chair...

What were the negative feedbacks you received?

I'm keen to try this only on the basis that it (a) does more or equal to opiate based medications (b) allows me to stop taking junk eventually or at least, much lower doses.

I'm worried about what the junk is doing to my insides, because I don't eat alot. In fact, most days eat bugger all, only because I'm too sore with no appetite or its just too painful.

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2 years 6 months ago #24075 by canoebwca88
canoebwca88 replied the topic: Spinal cord stimulator
Hi there Rob, Names Rich n I live in the USA and just wanted to let you know I had the trial and it was for 5 days, I had a 3 disc fusion done on my L4,L5,S1, sadly enough my surgery was not a successful one and I had it done in 2010, then hardware removal in 2012 then stim trial last year and the discussion I had with my surgeon, not the hack who destroyed my back n now I deal with Chronic Pain on a daily basis, but this other surgeon tried several injections first which in 2 years I had about 60 different injections they did 8 at a time, anyways my pain was localized mainly in my low back just a sharp and constant pain like a knife is jabbed in their and twisting but not so much of pain down my leg, occasionally and always down the 1 leg anyways they explained to me that the stimulator was mostly for people with leg pain, u know their sciatic nerve, but they said they have had a few that it helped there back pain so I agreed, and their is 8 contacts on the stim lead, at first they inserted n u don't feel it n u talk to them the whole time but as the Dr. From the Stimulator company wanted to be at my insertion of their product and when he turned it on initially he had it on a high level which I yelled cuz it zapped my upper right ribcage hard he was like sorry, sorry, which I was a Lil unhappy with that, so they moved it around n around trying to get more then one contact to hit the target area, they only were able to get 2 of the contacts of the 8 to hit that spot which it was 1 of the 2 that are right on the exact spot on the other side of each other on the lead, anyways they showed my how it works and it felt like static like a foot falling asleep hard tingling from my waist down to my feet, very uncomfortable is the best I can discribe, and u can adjust how much and how strong the static feels like, and by the 2nd day of trying it several times at variable strengths and it did not help me I couldn't stand how it felt at all n by the 2nd day late it moved after sleeping n then it was in my rib cage then by my Heart area all around from ribs to left shoulder n down arm then I shut it off the next day all my left arm n I shut it down n went back to surgeon on day 4 n they Begged me to let them adjust it and try for a few more hours I said ok but they pulled it within an hour cuz it didn't help so they just said sorry we were hopefull for me to be one of the lucky few it worked for with my type of pain. But tingling from my waist to my feet no thank you, I hated the feeling plus if I coughed or sneezed it would jolt Me hard n would jerk my whole body with a jolt of electric feeling, then I was tapping the down arrow for low low low power n that sucked just clearing my throat n bam, So Good Luck Rob, hope it works for you, or you have better results with your trial, the Meds my Dr. Has me on is the only thing giving me some quality of life back, and for the most part it keeps my back good n numb with very Lil to no pain unless I start to exert myself to much then it hurts n I stop n lay down n within 15 min it calms back down n im mostly pain free again. So good luck n I would be curious to know how it works for you so feel free to PM me or normal respond bak.
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2 years 6 months ago #24076 by bluerob
bluerob replied the topic: Spinal cord stimulator
Rich, thank you for your message. Greatly appreciate it.

What brand was the machine they had you plugged into?

Your story sounds familiar to the trial I am supposed to go on.

I rarely get the leg pain. My pain is like the twisting knife that you refer to, then, if I do anything, I feel as though I have been hit by a truck. My back feels as though its on fire, 100 people are standing on my lumber and just sore as all get out.

Thanks again for the replies!

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2 years 6 months ago #24078 by grappers
grappers replied the topic: Spinal cord stimulator
Hi Bluerob,
When doing research before going on the trial there are numerous websites where people give their experiences, a few had nothing good to say about the implant, when you do a little more research, you find it depends on who does the surgery, mine was done by the top surgeon here in S.A, it is all he does, not just for pain patients, for all surgeries that stimulators can be used.
As for opiate use, some have cut back or stopped opiate use, it depends on your level of pain, and whether they can cover all areas affected, my pain goes from midway of my back down to my toes, the very top bit of my pain doesn't get covered, I still take an opiate based slow release, only one, as it is the only one that I can tolerate.
Now as for getting zapped, yes you can, if you leave it on the same setting as for standing and then lay down, you'll get zapped, they should inform you to turn it down before laying down, as the leads lay closer to the nerves in the spinal column when you lay down, the sneezing and coughing getting you zapped, this only happens when you first get it put in but goes away after yo had it in for a while, as the permanent one anchors into position with scar tissue.
It is not a machine you can set to one level and leave it there 24/7, some positions mean turning the pulse up or down, I have 7 programs on my machine to cycle through, I have ones with two or more programs combined, single or double programs, ones that stay on constant others that cycle on for 15 seconds off for 15 seconds.
If you do get the trial, when going to bed, turn the machine down, then slowly turn it up until you are comfortable to be able to sleep with the stimulation, it doesn't have to be running full bore tingling that much that it annoys you all day, mine is set to a tingle that I can just feel, change in some positions and movement does increase the strength, good reason not to have it too high, otherwise it will put you off the trial.
My system is through Medtronics, it has been in for over 2 years now, the new ones on the market are semi self sensing, meaning when you lay down, after a minute or so it turns itself down for that position.
Like anything to do with pain, what works for one doesn't work for another, it is why everything they do is trial and error, at least with the trial there are no nasty side effects, like with drugs, the hardest part is living with six months of restrictions after the final implant, the biggest fail rate is from lead migration, hence the restrictions on what and what not to do, as I said the leads require scar tissue to hold them permanently in place, before that is dissolvable stitches, once anchored by scar tissue the leads don't move and you can get back to a routine.
For the rial I was put to sleep, they woke me up once they were in place to check the position was in the right spot, well mine was spot on, so an external stitch to hold the leads in place, it was back to the ward before being sent home.
For the final implant, I was also put to sleep, they had scans of the position of the leads from the trial to work off, they woke me up after inserting the leads for a check that it was positioned right, and yes I did get a zap, as they had then turned up too high, they then put me back to sleep to funnel the leads under the skin to my buttocks, and cut a pockets to place the battery in, on completion is was back to the ward for an overnight stay, in the morning a tech from Medtronics came in with the control unit and the recharging unit, programed the control unit with guidance from me, then went through the recharging process, over the months and years since< still have contact with the tech, to have programs tweaked or changed, they are very accommodating in this respect.

Don

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