Do you all know that you can just click on the poll boxes?

It's multiple choice so click as many of the little boxes that apply for you.

and then click the "Vote Now" button below the Poll

and to see the results click on View Poll Results on the right below the poll

Hi,

Roz, I posted one of these polls (the dystonia one, remember?) and got into a real old muddle over it, LOL!

I haven't had an SCS, so can't tick anything, but I noticed a little difficulty, because these poll thingies are designed to have a *yes-only* answer - (just looking to discuss it really, though):

(If I had had an SCS implant) -

Did you have a SCS put in?
OK, I can tick Yes.

If you were given relief from the SCS how long?
I can tick for "relief" but not say "how long for".

Did you still have to take pain meds?
OK I can tick Yes.

Any complications after having one put in?
I can tick yes.

Did the trial work better after the implant?
Should this be "before the implant" or "than the implant?"
[added later...] *sorry, just noticed you've already changed this in your post...

Has it affected your mobility in anyway?
OK I can tick Yes.

If you were oftered one, why didn't you have one put in?
Cannot answer this at all with a Yes tick.

But...what if I had an SCS but I had no relief, didn't take pain meds, had no complications and could get around OK? I could tick the first question only.

It's very tricky, this poll format, but it does make for great discussions. I think maybe for "informal surveys" rather than straightforward voting, you have to ask the question both ways to get a result, and ask lots of questions (remembering you can only answer "Yes") - and I think in future I'll start off with a Did you: kind of question format -
For example:
Did you:
need pain meds?
need no pain meds?

And split the ones where I want a description into sections, like:

Did you:
Get pain relief
Get no pain relief

If you got pain relief, did it last:
less than one year?
1 - 3 years?
Longer than 3 years?

That kind of thing. What a headache they are, I hope you aren't offended by my comments - I had a lot of trouble writing the poll survey I did, and still didn't get it right - these kind of things were only clear to me *after* I'd posted it, lol!

But actually, a combination of Poll and post comments are incredibly useful and interesting,

all the best

I haven't had a SCS put in, but my neighbor has one, and she told me that it does affect her mobility. She said that she cannot bend or reach up above her head because it will cause the leads to break, and then the SCS won't work.

Also, I know she told me that these days you can get it put in in a manner that you could "recharge" it when needed, but she has to have surgery every 2 years to replace the batteries in hers.

She had the SCS put in for a nerve injury, not RSD, but I thought this might still apply.

Thanks for starting this, Roz! I wanted answers to these questions myself, but no one answered my thread on it a few months ago. I hope you are well.

here is a post from beth about how hers is doing {TOS/RSD dx}
http://neurotalk.psychcentral.com/sh...91&postcount=2

Hi Artist,

I hear you on the did's and get's. I am not a sensitive person. I really appreciate you helping me out. I am wishing you day full of fun. Hugs, Roz xxx

Dear Vanessa,

One of my MD's who was against the SCS for me. Told me it would affect my mobility. Thanks for your help. Love, Roz

Hi, Maybe someone could check out search at Neuro Talk on the RSD forum? Hugs, Roz

Yes! My neighbor told me she would hate to see me get one of them, as I would be so limited. I told her that I would rather be so limited without pain (assuming the SCS worked), then the way I am now- so limited with pain! She was saying "but you are so young!"...

It depends on your situation, as to whether or not you think the SCS worth it, knowing you will have limited mobility. IF it worked wonders for me I certainly would consider it! Though surgery with RSD is an iffy decision to make... knowing it could/ would flare up the RSD.

Roz,
Sorry that it has taken me so long to try to get your poll answered here. One draw back of being "long fingered" (what DebbyV and I call ourselves since we are "long-winded" talkers, and our posts are like we talk....but written instead....ROFL. If that made ANY sense at all)..one draw back is that it takes SOOOOO long to get a post written, and writing the short novels that I have been writing the past couple of days on here uses up all of my "Spoons" for the computer. I have to take many breaks while writing, to rest my rt hand, and to move around because of my lower body and back problems....so it takes me a while to get things written. Then, I am pretty much "done" for the day. Seriously. Not even any emails get answered or anything.

So, that is why I couldn't answer your poll here before now. Like Artist said, I could see that it would require more than just ticking the little boxes for answers...and that meant me having to do more typing. I just didn't have any Spoons left for that. Had to wait for my "fresh spoon set".

(**BTW...Thank you Artist for posting that! I will try to put a short note on the other thread thanking you better there, too. But I wanted to make SURE that I told you how grateful I am that you had that, and posted it for me! For all of us! **)

Ok..on with the answers:

Yes, I had an SCS implanted

I don't know how much relief I got from my perm implant. A little, I guess. But, I had to have it removed due to complications. I only had it for about 9 months, and I had 3 revisions during that time. When it worked...it helped a little.

Yes, I still had to take pain meds. Never even dropped the dosages or frequency of them. Had to take all of my other meds too, besides just "pain meds". Antidepressants (2 different kinds at the time), Neurontin (yes..this was during my dreaded and hated Neurontin days), muscle relaxers....and I am not sure what all else. That is all I can remember for sure from then.

Yes...I had complications. I had to have 3 revisions done, to remove "fluid build up" from around the connections (where the leads connected to the power source) because the fluid that would build up would cause the stim to act wrong and become very painful. It would hurt to breathe when I had it on and there was fluid build up. I also had a problem with the power source in my hip rotating, and sticking out...which made it painful to sit in anything that had any kind of back to it (including couches, car seats, recliners...whatever else). I had my SCS removed 9 months after it was implanted. (There were some other complications with the original surgery it's self, but those were very unique to my situation, and had to do with my being allergic to surgical steel, and having a doc that stapled me closed. This wasn't the SCS fault, but my docs. Actually, I have wondered many times over the years for many different reasons if ALL of my complications with my SCS were my doc's fault).

Yes...My trail SCS was WONDERFUL!!!! I had no problems, and the coverage was right on (not so with my perm one......that was another thing; they never could get the lead placement "just right" again). I so wish that my perm SCS had worked as well....or even close to as well as my trial one did.

Ummm? Not sure? I guess? The SCS surgeries helped to cause my RSD to spread up to my lower back...and that has caused me problems. Before all of those surgeries, my RSD was only located in my lower right leg and foot, kinda in the area of wearing a knee high? After the surgeries (and I believe that each one made things worse and worse...and NO blocks were done before or after surgeries to try to combat this problem), my whole rt leg, and lower back were invloved. So...yes...I guess that would cause some mobility issues. I sure did fall a lot more after all of that than I did before.

Ok...that answers all of the things that I had ticked on the poll. But, I do have to say this, too...because we do have to be fair. There ARE lots of folks that have gotten SCS units implanted and that have had them work WONDERFULLY for them. Ones that have had them change their lives for the better. Those folks aren't here to post about their SCS experiences, because they aren't "Stuck" like all of us are. I wish that there was a way to find out the percentage or ratio of Good results compared to bad. I don't know how we could do that, though.....because the ones that have had successful treatments with SCS (and with other things) don't come around here anymore. That is because they don't NEED to....and good for them!

I do think that it is a good thing to know what kinds of things can and do happen with the treatments that we are offered, because sometimes we aren't told of some of the "Complications" that can come up...and some times we are told that some complications are "rare", and find out later that might not be the case so much. Information is power, I believe that with all of my heart and soul....but I also think that folks should keep in mind that there are cases where SCS (and other treatments too) have helped, and have made all the difference in the world to folks. That won't be so much reflected here on our board....it is sad to say that we are the ones that....well....things just haven't gone well for. Or, some of us are, at any rate.

Ok....I am putting up my lectern now. Promise! LOL. On with the Poll! I am interested to see what all anyone else has to say.

Oh..and I am sorry that, once again, this wound up getting kinda sorta long. *sigh


Jose

Here you go, Roz. This is threads with the words "spinal cord stimulator" in them. If you just want the thread's topic itself to be "spinal cord stimulator", then you will see them in this search, too:
http://neurotalk.psychcentral.com/se...searchid=73362

Hope that helps!