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Spinal Cord Stimulators

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5 years 6 months ago #14033 by grappers
grappers created the topic: Spinal Cord Stimulators
Spinal Cord Stimulator's, as this thread is for pain relief in today's health system I thought I would mention this as a treatment. As a lot of you may know I had this permanently implanted just before Christmas after having a trial 8 months earlier. Well progress the unit still manages to control a lot of the pain I was previously experiencing, there has been a bit of tweaking of settings to get the proper cover required, the biggest change is quality of sleep, as before I was going up to 4 days with a maximum of 4 hrs sleep over this period, now I get a solid 6-8 hrs. This has had the most impact, I am no longer on a knifes edge mood wise, and have more energy and vitality, getting out of bed in the morning still poses problems with back spasms and takes a good 15 minutes to straighten and get the legs moving.
Breakthrough pain, this still happens, as does spasms during the day which are harder to know when they will strike, before you would get a little inkling pain wise, these now get masked by the unit, so they come as a sudden sharp stabbing pain and my knees let go. And yes you can over do tasks, so pacing is still a big part of my life, it's not like they say you can go back to playing golf, well not with a back injury anyway, you do pay for over doing any task.
One can turn up the modulation to try and stop the pain, but turning it up too high is just as bad as putting up with the pain, so break through pain meds come in handy.
I am still on my opiate medication, so no mention has been made as to when or if I will ever cease to take them, the only way to find out whether the stim will hold by itself would be to slowly cut down and see what happens, at this time it would be a little to early to make that decision as the healing process is not complete and there needs to be more fine tweaking.
Overall though I am very happy I made the decision to have the implant, the only problem I have is where they placed the battery pack, it gets in the way, it's at the right height to get caught under kitchen benches, when you sit in a kitchen chair you have to watch it doesn't get caught when you stand up and two pairs of my jeans belt line is the same height so it rubs, it doesn't help that I don't have any fat on my bum cheeks, it is very visible and protrudes out from the skin, hence it getting knocked and bumped, if I had the choice I would have had in placed in my side rather than my bum cheek.

Don

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5 years 5 months ago #14121 by kebsa
kebsa replied the topic: Spinal Cord Stimulators
good to read your experiences, i can relate to knocking the batteries on things etc, i have a spinal medical pump and the first one was close to my natural waistband level on clothes etc and was als easy to knock when i used my prosthetic leg (it had a waist band) but the pump was sited around the front- can't imagine if it were in my butt! especially as i am wheelchair dpendant now


i know when my first pump reached the end of its life they considered (very seriously) the stimulator and i did like the idea of having some ability to adjust the level if needed - with the pump its not an option and i don't have breakthrough meds so have to find other was\ys to deal with the bad days that was tough at first but now usually works! anyway as i had now also been diagnosed with ms they decided the stimulator was not a good option, i could not have mri's that they use periodically to monitor MS - its is possible with the pump as long as the pump is turned off first.

i have also come across someone who had a nerve stimulator implanted to help deal with urainary incontinence due to MS, and she was rapt! for her it means she does nt need a catheter and it controls the urinary sphinctor- she turns it down or off to pee!

glad you are finding it worthwhile- the kind of options are so new in the scheme of things, i am sure there will be more technological options soon
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5 years 5 months ago - 5 years 5 months ago #14142 by Santosha
Santosha replied the topic: Spinal Cord Stimulators
Hi Don, thanks for posting on the stimulators.
This is one of the options that has been actively encouraged by one of the doctors for some time.
Personally i have been a bit scared of having anyone go near my neck again.
The last three procedures made the pain worse, which i had not thought possible.

Anyway my interest has been peaked of late and something in your post intrigued me.
You said that you had a trial approx eight months earlier before the permanent implant.

My question is did the trial actually last that whole eight months or was it for a shorter time.
If it was not for the full eight months, then how long did your trial last?
Also during the trial how did you go with the leads inserted under the skin, but the rest of the leads and battery pack external. Am i understanding the procedure correctly.

It is great to hear that you are experiencing some good sleep.
It sure does make a difference to one's ability to function.

Iain

Woof
Last Edit: 5 years 5 months ago by Santosha. Reason: Typo error

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5 years 5 months ago - 5 years 5 months ago #14146 by grappers
grappers replied the topic: Spinal Cord Stimulators
Iain no the trial only went for a week, the leads are inserted into the spine and come through the skin which is attached to an external battery pack and control unit in one, the first couple of days it was a bit sore as they hold the leads in place with stitches and then a whole lot of heavy duty sticky bandages so they are hard to pull out, but after that you hardly noticed it unless you accidental got the leads caught. Pulling the leads out was just a matter of cutting the stitches and pulling the leads out, no needles or pain relief needed for this process you don't feel a thing. He did say that the pain relief would last another couple of days after removal, that was not true, all my pain returned before I hit the car park. The reason for the implant was it was my last option, Kapanol was not holding any more and that was the only pain medication my system could tolerate, so I am lucky the trial went so well, who knows what I would be like now if it had not. The final implants are suppose to be done 8 weeks after the initial trial, but the public hospital where mine was done has to seek funding and only 3 implants are done each calendar year, and with all the cut backs, funding was getting scarce, I was told the next round may not even go ahead.

Don
Last Edit: 5 years 5 months ago by grappers.

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5 years 5 months ago #14197 by kebsa
kebsa replied the topic: Spinal Cord Stimulators
glad you were able to get one grappers, i remember back when they decided the synchromed pain pump was the best option for me, i was told very clearly that they could only afford to use it if i had private insurance or work cover to pay for it- thankfully i had private health cover. i was on 500mg kapanol daily as well as up to 200mg of ordine for breakthrough and still not coping well! back then they were not doing any pumps without private insurance, as they said at the time they could treat 4 patients for the cost of one pump! 8 yrs later they were doing a samll number of the pumps on non inusred patients. its the main reason i have struggled to carry on with my hospital cover and i am not sure ow much longer that will be!
i can remember eing told they could treat 4 patients for the cost of one pump but when i had the pump implanted i actualy went back to work and got off the pension entirely! so it was a good investment sadly the MS and spinal fractures from a fall put me back on the pension but thats just bad luck
i had also heard that they may have to reduce thenumber of these kinds of procedures they do due to budget costs and that is criminal- its not as though these are treatments that are done every day when there are are other options- they are usually last line options simply because of the invasive nature of the procedures. the sad thing is when they are used more widely they come down in price and become more available but i guess since chronic pain is considered a non lethal condition it will get funding cuts quicker than other procedures such as cardiac valve replacements etc- pity we can't put a price tag on quality of life
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2 years 3 months ago #25032 by Peter
Peter replied the topic: Spinal Cord Stimulators
Bumping Up!

I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)

So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)

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