Hi Hope, it took 2 years of tweaking / adjusting to where I'm happy with it, there is lots of meetings with your rep who adjusts the settings over and above the controls you have available to you on your remote at home. It is very technical and a lay person at home wouldn't have that skill set with having to go into the computer and adjust settings. The remote at home is a bit like changing TV channels until you find a program you can think you can watch for a while...
My trial for percutaneous leads was for 6 or 7 days, quite a lengthy one as it turned out, longer than most people have. They don't want it to be any longer than that because of the risk of infection, you have open leads hanging out of your spine to think about.
How they tell is by getting base line pain scores before the trial implant, then daily pain scores with the implant and post trial implant removal, more daily pain level scores. It was very evident from the graphs and information they collected over that period of time that an SCS unit offered me hope of pain reduction, it's not pain removal and it's important people trialling understand that. The pain never goes away, it just becomes less, and often noticeably more bearable. Keep in mind I was on 2mg Xanax, I was xanaxed out at night, my husband said during the trial I didn't cry in my sleep. Prior to the trial I cried at night in my sleep- lots.
Depending on where the leads are put in is what areas are covered. Mine is inserted in the thoracic area T8 and My two leads have 16 electrodes each. (Paddle leads have up to 32). Mine cover my lower lumbar back and down my leg. I can get a little upper back cover but if I want more I have to have another unit put in higher up. With the crumbling I don't want to risk it. My PM described my upper spine as being like a violet crumble, I think you call it a chocolate crunchy. (Imagine chocolate coated honeycomb).
There's is another user, I think Rae who had got two units, but I could be wrong, I know there is definitely someone on the SCS forum with two units and was/is living a happy quality of life.
Quote:
Originally Posted by Hopeless
Hi Pamela June,
How long did it take to get it tweaked to where you were happy with it?
How does one tell from a "trial" one (that is only in for a short time, without the luxury of all the tweaking), if it will be worth doing the permanent one?
It seems to me that a person might be very discouraged with the short trial since it is not in long enough, nor tweaked enough, to see the benefits that the permanent one "might" afford the patient.
This is just curious questions as I am not contemplating one.
How many different areas can be helped? Arms/hands AND legs/feet ??? It seems to me that since the areas are so far apart on the spine, a device such as an SCS might be limited to just adjacent areas. I guess what I am asking is if an SCS can benefit areas controlled by the thoracic region as well as those in the lumbar region.
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