Hi all!

I am a 36-year old F suffering with lumbar RSD and brachial plexopathy that occured from a car accident 2 1/2 years ago. I received a cervical and thoracic neurostimulator implants earlier this year and love them! I recently weaned myself off of Cymbalta (which helped immensely with my nerve pain) and that prompted me to join this forum to search for alternative treatments. I'm excited to get to know you all --- as only other RSD sufferers can relate to what I'm living with

Welcome to NeuroTalk Vanna!

I'm glad you found us! I don't have RSD but there are many here that do as you can see, and lots of wonderful and caring people. You'll find a wealth of information here. I bet you'll make some new friends as well.

Hi 'V' !

WOW! You have NO idea how glad i am to see u!
...Actually you will soon find out that aLOT of wonderful people are here too 'see' you !

First tho, let me say i am sorry to hear of your accident and the battle that has ensued - SO not fun....
The reason for my 'over-zealous' welcome is because i too am a new member and i've been looking EVERYwhere for people with Spinal Cord Implants....most of the feedback i've received has been more on the 'negative' side but i know there are alot of folks who have benefited from them, but i suspect they no longer have the need to hang out in pain forums... ?
I am currently awaiting Insurance approval for mine.....
Don't want to 'bombard' you with questions just yet....but PLEASE tell more!
Getting SCS implants is quite a big deal and to see that you have 2 of them!

Did u get them as the same time? Go thru the 'trials' first? Did u get instant relief? I'll be getting the 'Medtronics' in the L-2 thru L-4 region percutaneous by Anesthesiologist Pain Doc...(peripheral neuropathy in both legs for 5 yrs)...

Anxious to get to know more about you!

Rae

Yes, I am one of those who has benefitted IMMENSELY from my neurostimulators! As a matter of fact, I have volunteered to be an ambassador for my doctor for any of his patients that wanted any info or had any questions. I have one implanted in my thoracic region (for my lumbar, legs, and feet) and another implanted in the cervical area for my arms and hands. I did do trials for both (went with lumbar first--- larger area and difficulty walking took priority -LOL-). The first day of my trial, the stimulation felt strange and annoying to me, the second day I thought not so bad, by the third day I really liked it! And after awhile, you don't conciously notice it at all. During my trial, not only did I notice a reduction in pain, but an increase in my mobility. Such as, I could stand on my tippy-toes, squat and get back up on my own, and stand on my heels. I also slept for longer durations of time. It felt like a miracle happened! But, my doctor did inform me, the great results with my trial would be "halved" with the permanent implant because of the placebo effect. Still, to me, ANY help was better than nothing. I trialed the cervical area, hoping NOT to like it because I wasn't thrilled with having 2 implants in me. But, it made my hands feel SO good, I couldn't resist!


It's been 6 months since the permanent implants (they cannot do both at the same time. Surgery is scheduled 6 weeks apart). I went with a company named St. Jude, and they treated me so well! I felt GREAT for the first 6 weeks, then noticed a return in some pain (the refer to the beginning as the "honeymoon period"). Even so, I still LOVE my neurostimulators. They provide a source of comfort to me....as it feels as though your nerves are getting massaged--which can be a mental comfort to know there's SOMETHING to help on your worst days. And you can pick out many different programs to change the relief you need. The one dissapoint I have with this is that I still have my limitations and cannot push myself. It is true that it is NOT a cure, but a form of therapy. Also, I have two batteries (I chose the largest model, as I use it often) implanted in my lower back, which adds more "pressure" to that area.

Hope I didn't talk your ear off, but am sooo glad you asked me what you did! If I forgot to mention anything, let me know

Nice to meet you! Vanna

Hi Vanna,
Havin alot of trouble stayin online - it's either due to snowstorm and/or the forum is probably real busy because people are snowed in.....
Can't seem to post very lengthy posts.......

Anyway, i have so much i want to ask and don't know where to start! Getting SCS is a BIG deal !
Tell me more about the 'placebo effect' from your trial compared to the permanent....no one has mentioned this. Seems it would be a huge 'letdown' to only get 1/2 the relief w/the permanent. Was that in your case? Or do they just say that to cover their butts ?
Also, are the reps there for you when you needed tweaked ?

ttys
Rae

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