Started my SCS trial!

It's been awhile since I've been here, but I didn't want all you wonderful, supportive, caring people to think I'd forgotten about you. How could I? You've helped me so much in the short time I've been here.

On Friday, 2/4, I went in for my surgery to start my SCS unit trial. I have the Bostom Scientific Percission Plus on my hip, and mid-back is my incision for my wires, which lead all the way up to C2 because of the fact of where the nerves are they're trying to affect with my CRPS that effects my entire right arm; from my shoulder to my fingertips.

I know my doc said my neck would be sore, but I wasn't totally prepared for the pain I was in. I felt like I'd completely slept on my neck wrong, and had such a horrible crick in it! Bless my boyfriend's heart though, he came over to my house the night before and went with me to my surgery so he could drive me home, and spent the rest of the day taking care of me... and the immediate days that followed as well. I feel so lucky!

The next day though my neck was better. So far the only thing really annoying about my trial is that because... and the rep described it as dangling two pieces of string down a PVC pipe... there's so much wiggle room the ocassional jolt to my system if I shift the wrong way. I'm learning to shift my body about till I get everything back in alignment, though my remote is never far from my hand. My doc and my rep have been in touch with me every day, and I had one session of re-programming; we talked about it one day, and the very next day I was getting my unit adjusted.

On Valentine's day they'll pull my temp wires and will start the paperwork for my permanent unit. I'm not looking forward to returning to life with my normal pain levels; over the last few days instead of being a constant 9 even with my Percoset (15mg) I'm down to a 4! For the first time in over 3 years I am optimistic about the future... my depression lessened as much as my pain. Yes I know the SCS unit is not without it's small sacrafices ... losing my sence of touch in my right hand when I have the unit cranked up to combat the pain isn't fun, but then I value my sence of touch given I used to be a massage therapist. Still, that is a small price to pay for the decrease in my pain, and hopefully the eventual decrease in my meds.

My family has been very supportive... my mother basically took my son for me over the weekend so I could concentrate on just resting, and my boyfriend in turn took care of me. I haven't felt so spoiled in a long time! But it meant so much to have such a supportive, and understanding group help me through all of this; I don't know what I would have done without them. With my boyfriend having to return to his home with the weekend over (he lives 63 miles away) my 8 year old son has insisted he step up and take care of his Momma till Luis returns next weekend.  

I'm looking forward to my permanent unit, and the return to taking showers! I tell you long hair and no showers is not a happy combination, but I have an attachment for the tub nozzle, for washing dogs, and with the tub's wide sides and height I am able to lean over comfortably and wash my hair with little assistance. I'm not looking forward to the return of my pain when the trial period ends, but I know it's temporary.

While my life will never be again what it once was, for the first time in a long time the light at the end of the tunnel isn't an on coming train.

Hi and I'm sorry I took so long to respond! I don't have an SCS and don't know much about them, so I didn't really read into the post until just now. How nice that you had caring people to help you when you needed them and how wonderful that it worked for you!!! I hope the permanent one will be even better. Imaging if you could get to a 2-3 every day!

I wish you all the best and hope you will be ready for your permanent implant in no time.

Hi R,
I'm sure this sounds just plain sadistic, but do as many of your normal activities as possible while you have the trial unit in. That will give you the best feedback. I know firsthand how hard that is. You've been so drained from being in pain all the time & now that you have some relief AND are getting help around the house, it feels like a good time to take a vacation from at least some of your responsibilities. The prob is that you won't be on vacation forever with the permanent implant. Follow whatever restrictions you've been given, but try to do everything else you would normally need to do -- grocery shopping, cleaning the house, cooking, work, caring for your son, etc.

Even if it "only" gets you down to a 6-7 with normal activities, I would say that's a huge victory. And if you go back to your normal life & find the trial doesn't really help, at least you found that out before spending tens of thousands of dollars and going through an incredibly painful surgery and recovery time. But I'm hoping yours helps you as much as mine helped me the first 5 years. :)

good luck!
frances