anyone here get a stimulator?I would like to talk to you...thanks..have some questions..sorry about being gone,went through some tuff times..but I am here, on hopefully more often..

Hi Moosey,

Yes, I have a stimulator (SCS) what questions do you have?
Welcome back - sorry you have been going through rough times!

Thank you for your time..I would like to know how long you have had yours?I received mine in Aug...its not working as well as I hoped..How good does yours work for you?how often do you need to charge?I know everyone is different..I have to charge once a week..Its a big commitment. . .I can tell you one thing now that I know what it is like I think I would have said NO WAY...ty

I had two implanted in June 2011 (thoracic and cervical) and had a revision on the thoracic one 5 months later. They were a life saver for me, but unfortunately they didn't last long enough as I had issues develop and had them removed in January 2014. If I had to do it all over again, I would do the same thing. They helped so much in the time I had them.

When I had them I charged once per week. I never thought of it as a big commitment or hassle though. I just put the charging belt on while I watched tv and charged both units, one at a time. To me once a week is not bad. How long does it take to charge yours?

Why is it not working out for you? Does it not reach the affected areas well or what? Have you had it reprogrammed? I know mine took many programming sessions to get it right. I know that has to be frustrating for you.

Thank you very much for your help.Sorry it did not work out for you..Are you on a lot of meds.?i guess I thought it was going to work better than it is..I know its not going to take all the pain away,but I have usually 2 good days per week,and the rest,not so good.It has been reprogramed 2 times so far.it is hitting the rest areas,but sometimes it causes more pain,so I shut it off,and the all heck brakes ,have to put it back on,and try to go to other programs..i heard some people do not charge for weeks or 1 time a month..I guess its because I go to work ,come home and hurt so bad I go to bed,and then back to work,come home ,dinner, house work,shower and fit whatever else I can get in go to bed..Heating pad and meds,usually stay awake until 10-11 ,get up at 5:15,do it all again..work is so hard for me..I had to get a vanity because I cannot stand anymore getting ready for work.Do you still work?I still take my meds..too...Do you? I quit 1med. so far,and cut back alittle but I feel I am unsure if I can..maybe that's why I feel worse,but that's what my doctor wants..Thank you for everything..Charging always seams to hit me at a bad time..I need to get into a better routine which I know but when you hurt I feel I am lucky to do anything..

Hi Moosey,

Have you worked with the device Reps to adjust the settings like the Hertz and Amplitude or area of stimulation? I have to change my Hertz constantly in order for it to help. I honestly don't get any relief from it in the area of where my original CRPS II began but, I do find it beneficial [combined with other methods of treatment] for the areas of spread. I have had mine for 1.5 years but, I also have a pain pump [filled with fentanyl and ropivacaine], I still take oral meds, use lidoderm patches and spend my days doing therapy on/off throughout the day just to manage the pain. The thing for me and this may be different for you is that - no one form of treatment is enough. They all including the SCS only help a little.. and sadly sometimes not at all so working with your doctors to have as many 'tools' available to help combat the pain so you can keep functioning is key. It took me a while to realize that there was no single magic treatment.. once I grasped that and then worked with my doctors we have come up with a multitude of things that help me better cope. Each day or minute for that matter is different.. and somethings work sometimes and sometimes they just don't but I never give up or stop using something entirely when it doesn't work as well (or at all) one day.. it may work again or work better in combination with something else.


I know others have had problems with the SCS but at least for me, I am glad I have it.

I hope this helps - please don't hesitate to ask more questions if I didn't cover everything or wasn't clear enough in my answers.

Wishing you better days ahead,
Tessa

Oops I forgot to add:

I charge mine every other day. That is mainly because for my best use the Hertz have to be high and that this is what drains the battery. In the beginning recharging really irritated me but now, I just do it at night when I am laying in bed. The battery does get a little irritated with charging which is a bummer but nothing compared to the CRPS pain.

Rather than turning it off have you tried turning it down to a very low stim?

Moosey - good to see you on the board again! So sorry things haven't gone smoothly with the SCS. I don't have one but plenty of people do, glad some have chimed in already. Jesika in Californa has one too i m pretty sure.
Zookester - well done, thanks for the good info.
Wishing you all wellness ~ lottie

Forgot - Jessika is EEVO61

Thanks moosey! I really hated to have them removed because they did help so much in the beginning. They helped me to get through work another 1 1/2 years. Unfortunately I had to stop working at the end of Dec 2012 and now receive SSDI and LTD. The only meds I am on is the occasional hydrocodone and topamax. The topamax is really for migraines and headaches, but my dr thinks it may help some of the nerve pain too. I have so many allergies that I cannot tolerate most meds.

As far as charging goes, I really think it depends on the unit you have and how often it is used to determine how often charging is necessary. Like I said, I always did it when I was in the recliner in the evening watching TV.

I had my units reprogrammed a lot before I got to a "happy" place with them. Personally, I don't think having them programmed twice is very much. I would recommend that you contact your rep and go through another programming session. I had many programs on both of my units, which included different frequencies and sensations and I could adjust them up and down, side to side, whatever I needed. I even had a special program for bedtime since it was more intense when you lay down.

I agree with Tessa too about maybe putting it on a low stim instead of turning it off, sometimes that still helps more than you think.

Sorry you are having such a rough time. I hope you can get some relief very soon!!
Nanc