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Spinal cord stimulator implanted .

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2 years 11 months ago #22751 by grappers
grappers replied the topic: Spinal cord stimulator implanted .
Hi Carissa,
Yes waiting in the public system does take a long time, you were one of the lucky ones only having to wait 6 months from the trial, mine was a year, the only thing that got me through was knowing how much less pain I would be in once the final implant was inserted, and you are right, it is a struggle after having those 7 days and then told you have to wait, you have to have a strong determination to hold out that long, and there were days when I thought I may as well give up.
I hounded them all the time, but got the same response, no funding, and then you find out they only do 3 a year, and so many go for trials, lucky my pain was severe enough and the trial proved to reduce my pain, otherwise I could still be on the waiting list for the final implant, that's the part that sucks, so many miss out unless they go private, and pay the big price for doing so.

Don

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2 years 10 months ago #22770 by Carissa
Carissa replied the topic: Spinal cord stimulator implanted .
Hi Don,

I agree that part really does suck, I think my surgeon gets to do 6 a year so that may have been why I had a six month instead of twelve wait. I admire the strength it must have taken you to make it through twelve months I can appreciate how truly horrific that must have been.

You know the whole private health thing really blows my mind, before my first surgery I'd never had any health issues and never worried about private health so by the time I hit surgery three I thought okay now I think I'd better get it. Surprise suprise no health insurance companies would touch me without ludicrous fees every month and barely any possibility of covering what I actually needed because of pre exisiting history. After having a total of 8 surgeries it was only once I started on the stim path that I really noticed the difference between those who did have private and those who didn't.

My stim is covering 95% of my pain at the moment so I'm so happy, have to say I'm sick of not being able to sit or lay comfortably 3 weeks later. It's funny my leg feels so good I want to go for a run or something equally stupid but this battery in my butt cheek wow, it's like it moves during the night and if I'm lucky it takes about 3 hours before I can sit properly when I get up in the morning sometimes it's lasting all day ! I had a check up with surgeon he said it looks fine and I'm probably just sensitive because I'm nearly completely off all painkillers.

How long did you have pretty noticeable discomfort in the battery site ? I apologise if you have already told me this my brain has been a bit mushy. Before the surgery I honestly thought I'd be starting to think about getting back to work soon but I can't be out of the house for more than an hour without massive fatigue and I still can't sit or lay in one spot for more than about 20 mins so I'm not even close to ready.

Sorry I'm doing a lot of complaining and I don't mean to I'm so happy and grateful that I have the stim I'm just impatient to get on with my life after giving 8 years to this pain.

After a while I looked in the mirror and realised...wow, after all those hurts, scars and bruises, after all those trials, I really made it through. I did it. I survived that which was supposed to kill me. So I straightened my crown...And walked away like a boss.

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2 years 10 months ago #22771 by grappers
grappers replied the topic: Spinal cord stimulator implanted .
Hi Carissa,
It can take a good 3 months for it settle down, like the leads scar tissue builds up to hold the battery in place, I use to be only able to sleep on my right side before my accident, not any more, it's flat on my back with my knees bent, so the first couple of months is was uncomfortable after the stim being implanted, I also had a fluid pocket form, which isn't unusual, then one day It popped and felt like water running down my butt cheek, except it was in the inside, it healed a lot quicker after that.
I still find some recliners put pressure on the battery pack, especially the really soft ones, I keep clear of those sort of chairs, anyway they add to the pain from my back also.
95% coverage, one of the true lucky ones, I am happy with the 30 -40% I get, it enables me to get some sleep, but I have my bad days when the stim will not cover the pain, I still take opiates on top of the stim, and endone when the breakthrough pain gets too much to handle.
You don't want to do anything for a good 6 months, after that you can start to do activities, but take it slowly, being in pain for so long the body loses muscle tone and conditioning, last thing you need is to have a relapse.

Don

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2 years 9 months ago #22961 by Carissa
Carissa replied the topic: Spinal cord stimulator implanted .
Hi Guys

I hope you are all feeling as well as is possible, my SCS implant has made so much difference to my life it's amazing my leg is barely giving me any trouble and I can walk without pain for the first time in years.

I'm wondering if any of you had or have any experience with just a small thing I have noticed, when I have had a really busy day or have done anything that is very physical I notice I get an ache in my right hand side which is the opposite side to my implant but same side as the leg pain that the stim is for. The ache isn't extremely painful but definitely noticeable and sore, in the scheme of things considering how much pain I have lost its not a big deal but I'm just curious as to what it would be from and if there is anything I can do to avoid it.

Thanks guys hope you are having a good and minimal pain day xx

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2 years 9 months ago #22962 by grappers
grappers replied the topic: Spinal cord stimulator implanted .
Hi Carissa,
Even though the stim is doing a good job of controlling your pain, the injury is still there and will cause problems if you over do things, you still have to be careful not to push yourself too much, as pain will override the stim, so pacing will still be apart of your life, the advantage is not having to take a cocktail of drugs to mask the pain, the stim is doing that for you, but the same problem exists if you push it beyond it's limits.

Don

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2 years 9 months ago #23097 by Carissa
Carissa replied the topic: Spinal cord stimulator implanted .
Hi Guys

I hope everyone is doing as well as possible, I'm just wondering if any of you have any problems with what I have called the twitches. My stim is on all day and I turn it almost completely off at night because I find it's too strong when I lay down, since about two weeks after the surgery I am getting twitching all over my body not just in the leg that the stim covers. This starts at about 6pm and goes through the entire night.

Although it's not exactly painful It feels really uncomfortable and keeps me awake at night even when I take a sleeping tablet. To me it feels like the nerves are over stimulated, I haven't spoken to my Dr yet as I suspect he will tell me to increase the dosage of my sleeping tablet and I don't want to do that.

I only have the stim on about a quarter of the capacity that it has and I cannot turn it down or off during the day without going straight back to my old pain levels. I feel like this might be a trade off for having no pain which if I'm right I will just have to accept it but I'm just so tired from not getting decent sleep and not being able to relax at night after work at all because I feel like I'm so uncomfortable in my skin.

It feels like such a small thing to complain about when I have been dealing with so much pain previously but it's driving me nuts, do any of experience anything like this ?

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