Hello, I thought I'd introduce myself here as I've been reading so many of the threads and I will be having my trial put in on October 6th. I have RSD in both of my knees, mostly, with burning throughout my legs. As nervous as I am about this I am also very excited and counting the days! I had my psych eval this week which went very well. My pain has just really been awful lately making me so miserable, so I am just so hopeful that the SCS will be my answer. I feel more confident going into this than any other treatment, if that is a good sign. I'm going to be going with a Boston Scientific stimulator. Like I said I've been reading through all of your wonderfully helpful information and it's really great to get more personal stories of what some of you have experienced with it. I guess where I'm most nervous is all of the restrictions afterwards. I am young, I'm 21, and I'm fairly active, at least for someone with RSD. I go to school full time, I babysit a lot, and I volunteer teaching Sunday School to little 3 year olds. I've also come to be able to do a lot in PT, even squatting all the way down on inflatable discs and running for 2 minutes at a time! I'm worried about how restricted I'll have to be and accidentally pulling a lead out of place. But I tell myself that my quality of life is not very good now and if this *hopefully* works it'll all be worth it, right?

This is THE place in which to receive a welcoming chorus of thoughts and opinions regarding SCS! I came here in April [is that right Rrae?] 2010 wanting to learn about the psych eval initially and was wowed at the information I was able to discern through those who share. Most docs will provide information speaking to a hoped for 50% improvement in the pain level you experience as an indicator of whether the SCS is right for you. I do know one thing, during my trial of seven days duration, continuing my pain management meds as instructed while using the SCS I felt NO pain...... now, of course, that is using SCS while medicated.

Being a stubborn sort and wanting to be rid of the mind fogging meds, ultimately after permanent implant last year I did successfully wean off of all pain meds. Does that mean I feel pain now? Some. But then, if pain becomes intolerable, I can turn up the signal on the Boston Scientific remote and achieve a level of stim which overcomes the pain. I thank God for this wondrous invention!

During the week of Trial, I was encouraged to engage in minimal activities since there were only slight sutures and probably a whole roll of medical tape holding the leads in place and firmly to my back for the week. I was instructed not to bend, lift, stretch arms above my head, or twist, a litany I reduced to BLAST for remembering the limitations, knowing during the Trial it was JUST those seven days.

Since my Trial was so successful, the permanent implant was scheduled, and BLAST became a part of my life for months after the implant surgery, as I did not want the paddles implanted in me to risk movement. The surgeon, a great guy, ultimately relaxed my movement restrictions, and if you read posts by KZLRogue [Rogue, where are you?!?!?!?!] you will learn she was allowed to return to Golf and Karate after her implant surgery..... about a year or more after as I recall.

So, Yellow, look at the forthcoming Trial as a window upon which to gaze at opportunity. Opportunity to better manage pain. Opportunity to regain some of life from which you may have backed away. Also keep an open view to the possibility that the stim might not render what you desired. You have surely read some posts from others who recognized that reality after receiving it. As for me and my thoughts, it is Defintely worth a try.

Any Questions pre-Trial, just post 'em here on your thread and we will surely chime in [of course, JoanB will probably use her mandolin or ukelele instead ].

Caring,
Mark56

Thank you Mark for all of your advice, and the success that you've had is so wonderful! I'm so glad that you've been able to come off of all of your pain meds, that must be such a great feeling.

I think I'm going to get some kind of back support to wear at least for part of the time in the hopes that it will make me more aware of my movements. I know all it takes is one accident to cause a problem and I don't want that!!

And yes, I'm aware that this treatment might not work for me. I'm remaining cautiously optimistic as always. The problem for me with past treatments has been that they have all provided some temporary relief but nothing permanent. With the SCS being permanent, though, I think this could be my answer. But if not, life will go on and I won't give up.

I'm sure I will think of many questions in the near future, and thank you for the welcome!!

Hi yellow, nice to meet you. You really are young! I hope that your trial goes well. Mark's right, this is the place to be for all things SCS. I've learned so much here, even though I haven't even made an appointment yet to talk to a doctor about it.

Please keep coming back and let us know how you're doing!

Hi Yellow,

You're very welcome to our corner of cyberspace and yes this is definitely the place to be.
I had my first surgery when I was a week gone 21, I had a L4-5 discectomy and once I got over it I was fantastic for about 11 years or so and during that time I was so active, I loved it, anyhow since then my problems started again about 4 and half years ago, I had my Medtronic SCS in last December, unfortunately it hasn't been a success and my Dr wants to put in a SCS called Nevro you can only get it in Ireland & the UK at the moment but it's supposed to be good! By all accounts the Boston Scienctific is supposed to be good too, I don't know why it can't be got in Ireland and the UK as these guys have offices here too.

Best of luck, do keep in touch and key us know how you're getting on.

Sinéad xxx

WELCOME to this fantastic forum!!
Y'know I had to read your post twice because I thought you had copied MY original post! I got my SCS for the very same reason you came here! At that time I looked high and low to find other people with my very same pain condition. Mine started in the knees and radiated outward to include both legs. I too worked with young children (in Sunday school and a youth Christian band....we were called "The Trust JC Band"
Also, I had the injections (sympathetic nerve block) with temporary relief.

I try not to give people this much hope before their trials, but everything about you says to me that you'll be pretty happy. The soothing relief the SCS offers has been a Godsend. You'll just have to adjust yourself accordingly. (charging your unit, etc) Like you said, your quality of life has taken a dive. I'm so sorry someone as young as you has to deal with this.

Some things I wish I would have known beforehand are:
-- Don't wear elastic knee-wraps or anything tight around the knee area (if you have a neurologist, he will tell you that)
-- Be careful wearing the lumbar belt, as anything tight will cause additional burning pain....I thought my RSD was spreading to the back until I was told this.
-- BE SURE to mind all the BLT's. Take it from me who had to have a revision (actually I had the one lead removed, but that's another story)
-- during the trial, I think Mark hit on this, regarding the tape on the back. The hospital will put plenty, but what I did when i got home was i taped the lead wire in another spot just below the rest of the tape, that way, when you get it hooked on something (and you will), you've got double the protection and it won't pull directly on the lead implant site.
-- CRITICAL to a successful outcome is good communication with the surgeon and the rep as they are placing the electrode. You need the stim to be exactly where u need it and you don't want any 'pulling/grabbing' sensations -- that means it's too strong

And yes, Mark joined us in April and we're forever grateful.

It's great to have you here! I hope you'll stick around!

Caring
Rae

Thank you everyone for the welcome! It's really nice to have this forum full of such helpful people and information regarding an SCS.

Rae, that's so funny how much we have in common! And thank you very much for all of the advice, I will be sure to use it!



I have started practicing not bending or twisting my back for short periods of time for now, just to have an idea of what I will need to accommodate when the SCS is in. It definitely is tricky sometimes! I like to think I've gotten pretty strong in my squatting exercises but I will have to do a lot of extra work to make sure my legs can handle all the squatting I'll have to do. And of course I know there'll be times I'll need to ask for help. I'm also going to talk to my PT a lot beforehand so that she can help me figure certain things out. I'm a person who loves to be prepared going into everything

Yellow- You have a Marvelous preparatory attitude going into this scenario, and YES squatting now for practice, however many reps you can justify holding to a doorframe, for instance, for stability will strengthen your core and your legs as you prepare NOT to BLAST. Also, Rrae will suggest you get one or two of those reacher/grabber things so as not to stretch. Further, she may also recommend you look into dry shampoo for the week, so bending and such for hair washing might not pose a risk [but, then, I do not want to steal her Thunder..... or do I? ]. Assuming you are going to be "around the house as you proceed through your trial, you will want something loose to wear so as not to be struggling with the wires taped to your back. I just did cutoffs and a tshirt. Not stylish, but it got the job done.

MAKE NOTES during the course of your Trial, in the nature of journalling, as these will be of tremendous value to your pain management doc and company rep when the Trial ends and decisino time is upon you. Use the 0-10 pain scale in describing your pain during the Trial so as to more empirically demonstrate your pain; further, begin tabulating it now so as to demonstrate a before contrast with the During Trial period of use.

Write all questions regarding procedure, behavior during trial, limitations on movement they may wish to impose, and the like so you are prepared to ask and be informed.

Pester Rrae all you can, because she both needs it, and will be encouraged by the humor. [she has a neverending font of humor].

AND, thank you for your bravery and openness in joining us to pursue a means to potential better pain management!

Caring,
Mark56

Yes, the catch-22 of it all --- can't do any bending but we gotta bend down for so many things.
This, you will count as your 11th commandment --->> A Reacher/Grabber.
You can find these in most stores. They will save you lots of grief. Another thing I did was put several things up higher on counters, tables, etc. so that I wouldn't have to bend down.

I'd highly recommend you check out our Peripheral Neuropathy forum. RSD and PN go hand in hand with that burning pain. It is FULL of good info and it is also a very active forum. Be sure to check out the top section called the 'sticky's' Here's the link to get you there...

http://neurotalk.psychcentral.com/fo...aysprune=&f=20

We all know how frightening the upcoming trial can be. Believe it or not you should be able to tell immediately if the stim is going to work for you. That's why it is crucial to communicate well with the team. That can be a bit tricky while you are in your 'twilight daze'...... also, ask to get your OR post-op instructions BEFORE the procedure. I got pretty stressed out trying to comprehend what they were saying.

No such thing as 'stupid' questions. I keep trying to convince someone of that but I won't mention Joan's name.

Rae

Those Reacher grabber thingys are such a Godsend I use mine all of the time, I have one upstairs one downstairs!

Great inventions and you will invent your own way of doing things I know I have!

Best of luck

Sinéad - ask me anything you like even by PM if that suits you I'm open minded and not easily offended. You are only 21 I remember how dlifficult life was at the time!!