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 05-29-2013, 02:48 PM #21
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So sorry you are going through this ordeal! Then, for your Dr. to be so rude is just so mean. It takes a lot of courage to even undergo the trial.
I'm supposed to get the trial in a few weeks so it is important for me to know of your experience.
At least there's lots of support here and everyone can empathize with each other!
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Old 05-29-2013, 08:38 PM #22
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Originally Posted by Brambledog View Post
I'm so sorry it didn't work out for you....but your doc sounds like a bit of an *** all in all, and there has to be a chance that he has just given up on the idea... He certainly hasn't explained himself well or conducted himself professionally considering your situation.

I'd think seriously about finding another doc and getting another opinion on your situation. I think you deserve better than this guy has been giving you...just my opinion

Oh dear. You've really gone through some tough times lately, and I'd hoped this would finally help a bit. Don't give up hope of something helping though

Bram
Thank you! I will not give up hope! I truly believe everything happens for a reason and someday I will find out that reason.
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Old 05-29-2013, 08:47 PM #23
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Originally Posted by AZ-Di View Post
So sorry you are going through this ordeal! Then, for your Dr. to be so rude is just so mean. It takes a lot of courage to even undergo the trial.
I'm supposed to get the trial in a few weeks so it is important for me to know of your experience.
At least there's lots of support here and everyone can empathize with each other!
I would just make sure to ask lots of questions and be very honest with them and yourself. And have them really explain things to you. I should have made the doctor explain his decisions more to me. Like why he took them out! Write things down! It is easy to forget. Write down how you are feeling a couple days before your trial..where your pain is, how intense, what makes it worse or better, what is hard for you to do, etc.. I wish I would have done that so I would have been able to compare while I was on the trial. I had such a hard time with pain in my back that it was hard to tell how my leg was doing. But I guess not everyone has that much pain in their back. Others could see a difference but at first I couldn't. Be VERY careful! Take lots of rest the first couple days to give the leads some time to heal. Then test it out. Go on light walks or whatever so you can tell if it works or not. I never had the chance to do this. I did get to walk a couple blocks (which I haven't been able to do in almost a year!) and it was awesome! Anyway, that is some advice that I can give you based on my experience. If you have any questions or what to know anything else just let me know. I would love to tell you. I wish you the best of luck!!!!
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Old 05-29-2013, 09:10 PM #24
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I would just make sure to ask lots of questions and be very honest with them and yourself. And have them really explain things to you. I should have made the doctor explain his decisions more to me. Like why he took them out! Write things down! It is easy to forget. Write down how you are feeling a couple days before your trial..where your pain is, how intense, what makes it worse or better, what is hard for you to do, etc.. I wish I would have done that so I would have been able to compare while I was on the trial. I had such a hard time with pain in my back that it was hard to tell how my leg was doing. But I guess not everyone has that much pain in their back. Others could see a difference but at first I couldn't. Be VERY careful! Take lots of rest the first couple days to give the leads some time to heal. Then test it out. Go on light walks or whatever so you can tell if it works or not. I never had the chance to do this. I did get to walk a couple blocks (which I haven't been able to do in almost a year!) and it was awesome! Anyway, that is some advice that I can give you based on my experience. If you have any questions or what to know anything else just let me know. I would love to tell you. I wish you the best of luck!!!!

I had similiar experience as you did. I agree, the procedure was very uncomfortable. I was hurting laying on the operating table while rep and doctor were doing their thing.

I have spine issues; but this was suppose to help the PN in my legs and feet. The sensation/buzzing was in my groin area and the top of my legs. That's as low as it went. This was very uncomfortable. Called the rep. He met me, after the weekend, at the doctors office. He tried reprogramming. No success. He left the room and the doctor came in and said they were removing everything. That was the end of my trial. Although the doctor wanted to do another trial a few months later. I declined.

Like you said....things happen for a reason. This made me realize, I do not want to go thru the permanent SCS. Just too many issues. The battery pocket; usually in the butt seems to cause others so much pain, as well as leads migrating, etc.

Wish you well,

Gerry
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