New here with many questions

April 24, 2010

Moderator's note:

Hi Becky r1126

I placed the addition on your name because we have at least 2 other Becky's in

the group. Ideally, will you change your signature to your name, plus where you

live with it. This will make things clearer.

Kaylene

Hi, I am also a newcomer to the group. I am a 30 year old female who was born

with amniotic band syndrome which resulted in missing fingers with severe

clubbed feet and a missing toe.

All the surgeries I needed resulted in RSD or CRPS as they now call it in my

left foot and right hand. It's spread up my left calf, as well. I have tried

sympathetic blocks (for both hand and foot/leg) without much relief because I

think the RSD was too far along at that point (was misdiagnosed and had had it

for 10 years at that time.)

I am currently in a lot of pain and am on narcotics for it. I've tried every

medication and nothing seems to help enough for my pain to not interfere with

daily living.

Since the sympathetic blocks didn't work, does anyone have any suggestions for

other types of injections or therapy? I am seeing a very good pain doctor who

has told me that there aren't any other injections that I could benefit from. He

advises me to try a spinal cord stimulator but I am scared to do that because

for every success story I am told, I hear 20 failures of the SCS.

My foot/ ankle doctors (I've seen many of the best in the country) tell me that

I should get a forefoot amputation for the past decade but I've been hesitant to

do that, because it's so permanent, there are many things that could go wrong

and make my pain worse, and my pain doc who treats my RSD tells me that the

forefoot amputation could cause the RSD to spread and get worse.

I know that this post is long, but I have been in a lot of pain for a long

time(15 years or so) and I want to hear 1) if anyone has had any experiences

with RSD and surgery and 2) after reading a bit about me, are there any other

pain treatments(injections, blocks, meds?) that you've tried and have worked?

Any you think I should try?

I should have posted this as a new topic so I apologize. I just read a post

about pain blocks and wondered if anyone thinks I have any other option.

Thanks,

Becky r1126

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