Hi Beth,

I had a whole post and it disappeared as I was writing it!

The way I've read it on the RSD forum for years is the opposite about moving about post op.

Kind of like if you glue something on a piece of paper and leave it alone it will stay/stick better than if you start swinging the paper around or tugging on it. What your doctor said confuses me.

I had a SCS kit with info and a video and it had the following instructions:
Your doctor may recommend that you restrict your activity for several weeks. During the first six to eight weeks following the surgery, you will need to avoid lifting, bending, and twisting movements. This allows time for scar tissue to form and anchor the lead.
Then after the initial 6 wks it suggests:
Use normal caution with these types of movements after the initial six to eight weeks. Once your incision has healed, the neurostimulator site requires no special care. However, you should talk to your doctor if you perform any excessive or repetitive activities that may damage your neurostimulator or lead.

Whatever you choose, I hope it will give you plenty of pain relief. I'm sure you, like me are tired of all the pills, which probably are making my liver sick, so I've chosen to go the spinal route also. I've talked with so many who have gotten their lives back by being able to walk again, swim, attend social activities .. or just being able to shop or hold a grandchild would be nice.

Is it too much to ask that we have some semblance of a life back? Even if we can't work, it would be nice to drive and not stay at home day after day...or rely on others to do everything for us rather than do it for ourselves & end up in bed the next day ? Independence sounds so good right now.

I really hope it all works out for you....even a year or 5 with pain relief sounds good right now. Maybe 10? wow, I caught myself smiling

Never lose,
Hope

Don't you HATE when a post you're ready to send disappears???

Wowl, I appreciate all the love and concern, I really do. You've all been around for quite a bit of this journey with me - you've read about each of my attempts to find an answer for my pain, given me support, encouragement, and advice. I couldn't ask for better or wiser friends than the ones I've made here - thanks

First, I absolutely trust my Dr. He's certified in pain management and anesthesiology and has implanted over 130 of these SCS units, with over 85% success rate. After surgery he does restrict patients from almost any unnecessary movement for 6 weeks, he only encourages movement during the trial, he feels if it moves during the trial it will move during after the surgery, no matter how careful you are. And he'd rather know ahead of time and try to find better placement - which may be the reason for his high success rate. He's very smart, but very down to earth, and I know he'll do his very best for me - it's just that I am a bit of a complicated case - does that surprise anyone? If I had a dollar for every time I've heard that - I'd have several dollars by now.

If some of the procedure steps seem different than yours, remember this is an Advanced Bionics SCS, not a Medtronics or ANS, so that may be why, and they are constantly undergoing improvement.

I really don't know what to do at this point - I really don't.

Anne, I had at least 3, maybe 4 C8 ulnar nerve root studies across the brachial plexus - at least one done of the left arm, meaning he would have inserted the needle into that C8-T1 space on the right - I'm almost speechless over this......

I'm not a huge Hooshmand fan, honestly. Some stuff I buy, some I don't. Dr Schwartzman told me I shouldn't get an SCS because it would stop working in a year or two, but his answers were more ketamine boosters and then the coma treatment. Uh, no. Can't keep flying to Philly, and the boosters don't really work any more, and I'm REALLY not desperate enough to try a medically-induced coma, thank you very much!

My kids are 11 and 15 - I'd do almost ANYTHING to feel better, so I can spend time with them, having fun, doing girl things, just being a NORMAL mom.
A year or two of reduced pain would be PRICELESS. My youngest barely remembers me before this happened - she was seven. My oldest is 15, a sophomore, before you know it she'll be leaving for college. I need some good time with them, you know?

And the thing is, I really think the SCS is an individual thing - for some it works great, for others it doesn't, or stops working. Dr Togut said some do quite nicely with it. My Dr says he has several RSD patients that have been using one for years. Others online have told me how they love theirs.

I'm not too concerned about the surgery, (hey, what's one more, right?), as they've done this on many RSD patients - I expect I'd have a sore tushie for several days though. Dr wd give extra pain meds, I don't know if a block wd be possible? Would be worth asking. Dr mapped the exact spot he placed the electrode for the trial, so he knows where it needs to go for the permanent surgery, no need for them to keep waking me and putting me back to sleep this time.

The coverage I got the first two days of the trial was awesome! It was completely unbelieveable to me that my arms, from fingers to shoulders, didn't hrt, or the pain was so mild I didn't notice it!! I slept the best, most refreshing sleep since Feb 2003, and felt more like myself than I had since my injury!

But if the leads can't be inserted at C8-T1 because of scar tissue, and I opt to have the Dr insert them at C7-C8 instead, where they were for the trial, there's a high risk they will move before they scar in and I won't have any stimulation, and the surgery will have been for nothing.

Feel like a kid offered a sucker only to have it snatched away