Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

 
 
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Old 07-24-2009, 07:21 PM #2
SBOWLING SBOWLING is offline
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Join Date: Mar 2009
Location: Ohio
Posts: 310
15 yr Member
SBOWLING SBOWLING is offline
Member
 
Join Date: Mar 2009
Location: Ohio
Posts: 310
15 yr Member
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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
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