Rae,

I hope you are enjoying your snowstorm (although with peripheral neuropathy, I'm sure you're cussing the bitter cold temps). The questions you are asking about the neurostimulators are great questions, and anyone thinking of getting one (or two) should be aware of many factors.

When you first receive the implant (or during a trial), the frequencies emitted from the system block the pain signals from reaching your brain, therefore stopping your brain from sending the pain neurotransmitters to the receptors. The result---- little or no pain! Got my pain level down to a 1 in the beginning, which was like hitting the lottery (I'm sure you know what I mean). But, believe it or not, your smart-alec body will also build up a tolerance to these frequencies, thus making the pain relief less effective. Being leary of this, I try not to "over-use" my stimulator and treat it like a drug so my tolerance level will stay low. BTW, I was told that I couldn't overuse the stimulators; which I'm sure is true as not being harmful for constant use as a treatment. But, I'm trying to be smart, turning it off when I really can go without or am on pain meds so my tolerance level stays low so I can get a long endurance from this therapy. Any relief is greatly appreciated, even if it's a little, when you are trying to sleep at night and the top of you legs and feet are as irritable as hell.

Also, the reps I had were great! I worked steadily with 2 or 3. They called me every day during the trial, meet with me whenever I needed my programs adjusted---- which leaves me with an IMPORTANT point. The right programs in your stimulator will MAKE or BREAK the success of the relief you get. I cannot stress how important it is to properly communicate with your reps. The reps praised my ability to do that and in turn, I was able to make the most of my stimulators and receive the greatest relief that was possible.

Bottom line for me.... maybe doing this procedure was, in fact, a big deal. But, for me the option of not doing it and living the way I was not an option.

WOW Vanna, that post is PRICELESS. I'm actually gonna print that one out!

I can't TELL you how many hours I've spent online researching these things and never ONCE have i been exposed to the inside info u are giving me!!
I've studied the medical perspective, then decided it was more beneficial for me to hear testimonies straight from the patients, so i've googled everywhere trying to 'hear' it from the pt's point of view.
You've got a wonderful way of actually 'placing me at the scene' and that is entirely too awesome;
you will make a GREAT ambassador!

I'm trying to actually picture being there (keep in mind = i'm probably the world's biggest weenie) cuz when i was there just to get the SNB (sympathetic nerve blocks) it hurt so much i couldn't believe it.....and so there i'll be, temporarily put under anesthesia.....then woke up to dictate to the surgeon precisely where the leads need to be, then put back asleep to get the procedure finished. THEN woke back up to communicate clearly to the reps which settings work....oh my lord.
I'll bet my bottom dollar that the reason so many people have less than successful outcomes is because they didn't/couldn't communicate these VITAL pieces of info !! I just don't know that i'll be 'with it' enuf to pull this off! This is certainly info that couldn't be stressed enuf to the pts.

One thing that p's me off here where i am, the dudes that do this procedure become so COMPLACENT in what they do and these things must seem like a 'dime a dozen' to them - they do NOT sit down and talk this straight with us! This 'simple' procedure to them is PARAMOUNT to my entire future !! (As you are well aware of) .... and it certainly is as u stated....living the way i am now is NOT an option much longer. I simply cannot live this way. This is my last hope. period.

Have you had a problem with 'headaches' after you had this done ?
i'm gettin one now just thinkin about it - that's what reminded me to ask that.
I've heard that headaches might be a problem.....

Good God, i've typed myself silly here......

And to think, you came to the forum to GET advice.....little did u know you'd be doling it out by the bucketful ....
I so very much appreciate you !

So glad you mentioned that! During the trial I DID notice I had a headache (which is one regular pain symptom that I do not regularly have -HA HA) and I mentioned it to my doctor. He told me the headache was not from the stimulator. My instinct told me it was.... I know my own body and was sure it wasn't a coincidence. Headaches during both trials.....headache gone when trial was over. As you know, I still went ahead with the implants and the headache did return with it; but only for about 2-3 weeks. I do not get them anymore.

As for your performance anxiety about the procedure, it's really not that bad! When you think about the pain you are suffering day in and day out, a few seconds of discomfort is a small sacrifice in what you get in return. Realize that, and everything should feel okay for you. I guess I'm lucky because I'm pretty fearless. I once had an emergency C-section where there was not time for the pain-numbing stuff to take and they had to strap down my head and body and go ahead and cut (talk about barbaric). After "surviving" that pain (twice--happened again with my second son) and daily life with RSD, everything else pales in comparison!

Hi Rae, and welcome to NT! There are so many caring, friendly, and helpful people here.

We're so glad you found us!

Here is the RSD forum link, if you haven't found it already.

http://neurotalk.psychcentral.com/forum21.html