Quote:
Originally Posted by Gymjunkie
Hi MominPain
I would agree with the other posters that this is all proceeding too fast. An SCS will do nothing to prevent spread - it merely substitutes a different sensation in place of pain. If your pain is currently managable then there is no reason for anyone to be recommending an SCS at this stage.
It is an invasive surgery which carries the risk of CRPS occuring at the site of the incision. It has a long and very limiting recovery period where no bending stretching or twisting is allowed so that the SCS unit is properly covered with scar tissue. Then there is a high risk of complications - leads moving, infection etc.
Why would you want to go down this route when you are able to manage your pain with over the counter pain meds? Why would any responsible pain specialist suggest it when he/she is aware that you can manage your pain with over the counter meds? There are a raft of other prescription medications and other non-medical pain management techniques that you would work through before considering an SCS.
The deep aching pain is a feature of CRPS for many people. I have had deep aching pain from day one. You should make sure that your doc is satisfied that it is a feature of your CRPS and it is not being caused by something unrelated though.
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I agree......I have no intention of letting them put a SCS in me. I guess my biggest question was whether it was a "preventative" measure as opposed to a "maintenance" measure. I've done a lot of research on the internet since posting this. I do NOT want it unless it becomes absolutely necessary. I have no idea why he mentioned it???
Basically NO ONE around where I live understands this disease or has even heard of it (or few have). I educate more nurses in the Pain Centers of the two hospitals here. Yesterday, I had the opportunity to educate an ER doc (and showed him my "trick" of being able to turn blue and purple and red by simply letting my feet dangle). I am so frustrated and depressed at this point.
Clearly, the injections are NOT working. I had a fever when I went for my injection yesterday. I had to tell them "No, this is a symptom of my SNS acting up......I am not sick".......my blood pressure is all over the map......they are trying random meds on me to see what will help.....I am not sleeping......my right arm is like a bruised pin cushion from all the IV's in it.......I am NOT happy about ANY of this. I wish they would just put me in a coma and wake me up when there is a cure. I'm tired of twitching all over.....I'm tired of the invisible man stabbing my ankle, the beast gnawing at my legs, and my foot stuck in invisible ice all the time.
Here I am trying to "deal" with the pain only with Advil and my Pain Doc scolded me yesterday for taking Vicodin before and after my injections (as they've instructed me NOT to take Advil 24 hours before or after) and telling me he wouldn't call me in more pain meds if I ran out early. I was lying on the table on my stomach.....they had already given me a sedative and I said, "But YOU haven't even called me any in......(I DECLINED their offer to call me meds in a few weeks back).....these are still left over from my surgery.......I still have a refill left......I take 2-3 Vicodin a day when I can't take Advil........I AM NOT A DRUG SEEKER". Screw him. I was up ****** off about it all night long.....why I couldn't sleep.
Disclaimer: I am NOT judging ANY of you who NEED more pain meds than that. I really am able to manage it with Advil RIGHT NOW. I KNOW how painful this wretched disease is. Right after my surgery, when I was elevating/icing it, I was taking 8-10 Vicodin a day, easily. It has calmed down since then in me (and since I quit doing all icing and stuff) and the pain comes and goes (like contractions). If it was with me all the time, I wouldn't be able to manage it.
Sorry I am discouraged.....my poor hubby just got an earful of all of this over coffee.......I had nowhere else to go but the forum!! I hope I snap out of this soon. I feel like I'm heading for a serious depression.
I appreciate all your responses. I will NOT be getting a SCS......maybe some new doctors in a different town instead......take care all!!