any words of wisdom or advice? I have the info from the Drs. office and the bsics on what to do, what not to do when they put in the trial stimulator.

Just looking for advice and information from "real life" people and what they have to say.

I know that I am not to lift anything heavier than a gallon of milk, no twisting, no turning, no driving, take it easy, etc. I am talking real life info.

Thanks in advance everyone!

The RSD is in my left leg/lower extremity.

Awna

Hello Awna,

Not to scare you but here's my experience. During the trial there is a small hole left open in your back for the wires to connect to the genertor. The generator will be on the outside of your body and will be implanted if that's what you decide. There will be a tight elastic band around you torso area covering the bandages that are keeping things tight so they don't move.My trial period was a week. If you twist wrong be prepared for pain. My tolerane is high for pain and I moved wrong and the pain brought me to my knees.

You are semi awake for the procedure so you can communicate when they program the unit. It feels like a lot of pressure when the leads are being inserted for me it wasn't really painful. I had two leads the length of my spine from C3 to the lumbar area. They were trying to stimulate my arms, legs and low back. So the sensation may be different for you. I ended up with a spinal headache. If you never had one they are awful. The spinal fluid leaked out of my spine because the dura got punctured. The fluid builds up around the brain and I had the worst headache I have every had. Once the puncture in the dura heals itself and closes the fluid leak stops. It took mine over a week to get better. I had to lay flat in a dark room and drink caffiene.

Make sure you understand the romote before you go home. The probem for me was because of the medication used during the procedure I was so out of it that I didn't pay attention to the instructions. My husband was with me an he tried to help me but you have to be the one using the remote and keeping it close to the generator so you can read the screen. The programmer from the manufacturer of the scs will be there. Ask them to go over the instructions before you are given any meds for the the surgery.

SCS are very very posture sensative. Keep in mind my leads were in my neck. When I turned my head the stimulation would turn its self way up it was like being shocked. When I would sit down the stimulation would almost stop completely so I would have to adjust the stimulation. When they program it you are standing becuase they can program it with you sitting. I'm talking about the programming that happens after you have it implanted.
Good luck and feel free to PM me is you have any questions you want to go over.

Take care,
Sherrie

My friend just had her trial taken out and is waiting the perm. I think everyone has a different experience and recovery. The lady I am talking about obviously found it a benefit to go ahead with the perm. I agree about making sure you know how to use it. This lady was shown and was told what she should and should not do. For her they did want her to do as much as she could so that she could rate her pain. Obviously no lifting. She said the area was tender. She emailed me the day she had it and just felt loopy from the relaxing meds. Good luck and I hope it brings you much relief

I now have a permanant scs in from a surgery gone wrong... For the trial it went smoothly, I can say that you will be able to notice if it really helps immediately-1day. I had mine in for 3 days, and then it got removed so we can get the permanant one in. I pretty much laid and watched movies while it was in. You will be able to tell if it works for you. I am 19 and have one all the way up and down my back. Mine was taped up on my back- When they took the tape off it tore my skin off so be prepared. Also if it is in your neck, having to sleep and live in a neck brace for 6-8 weeks gets frustrating because you arent able to drive because you can not move your neck. The worst thing about getting it in was the post op pain afterwards. It relieved about 60% of my RSD pain, which was like 100% for me. The incisions are deep and from getting cords put up your back your muscles spasm. I used lidoderm patches and had considerable amounts of relief from the muscle pain. And I can say being 2 days shy of 8 weeks after surgery, when you turn or move the shocking is less. It gets better day by day after it scars in. But sitting against hard chairs or something that pushes into your back makes the stimulation stronger.
Also, before I had it put in my hand looked like mold and was hairy as a monkey and finally 6 weeks later it looks more normal than I have seen it look in months!!
Say a prayer, and let the healing begin!

Hi Ams
Ive heard good and bad,,either way i wish you well,,im supposed to have one installed too by dx of my pm dr,,,,,,,,im going to wait a bit longer,do you have sip pain or smp pain? and alot of people whom ive spoken with ,ussually can tell when they put a temp in,,,either way precede with caustion,,pray to the Lord and may he guide you ,,,,bobber

Sherrie, good point about getting information about everything BEFORE the procedure. I had the same thing - I was so "out of it" and they were anxious to kick me out, that I missed most of what they were telling me.

The other unusual thing is that you are all taped up and warned about being careful with bending, lifting and twisting – and then you are supposed to evaluate how it works with your pain. This might be hard to sort out, but try as well as you can.

Good luck to you,

Mike