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 04-12-2010, 06:40 PM #21
yiisd yiisd is offline
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Quote:
Originally Posted by Lisa in Ohio View Post
can anyone help me to understand what full body and internal RSD are?
I was diagnosed late with RSD and am currently waiting approval for a SCS.
Not sure if this is a good thing, but the Doc. said if this does not work nothing will. I am now having kidney, neck and head pain and am hoping that this is not a spread of this disease. Thank you all for being willing to share your stories and concerns, until I got lucky and found this site, I really felt all alone. My heart goes out to all of you and your families. Thanks, Lisa
[COLOR="Navy"]I've known 5 "RSD" patients who had SCS implanted. All 5 are very unhappy with it. However, I spoke to a couple of patients in my doctor's reception room who had a "pump for intrathecal delivery of pain medication" implanted to administer pain medication. These patients appeared to be very happy with their choice. My pain management physician also agreed that this is a very good delivery method and would be of benefit to many. You may think of this vs the SCS. Food For Thought!
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Old 04-12-2010, 07:24 PM #22
Lisa in Ohio Lisa in Ohio is offline
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I do have an attorney and she is half nuts in trying to deal with the self-insurer. Thank you so much for all the feedback, I really appreciate it. My daughter is 28 and is scheduled for surgery tomorrow to terminate a much desired pregnancy due to it being a molar pregnancy. We are hoping that she will not need the chemotherapy after the surgery. It is really hard because she is in S. Ca. and I cannot be there for her right now. Still no word on the SCS, or the three IMEs that I just had to go through. I think these doctors that do this ought to be ashamed of themselves. Peace to all.
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Old 04-15-2010, 12:14 AM #23
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Oh, I'm so sorry about your daughter. That is heartbreaking.
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Old 04-15-2010, 08:24 AM #24
daniella daniella is offline
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Quote:
Originally Posted by Lisa in Ohio View Post
I do have an attorney and she is half nuts in trying to deal with the self-insurer. Thank you so much for all the feedback, I really appreciate it. My daughter is 28 and is scheduled for surgery tomorrow to terminate a much desired pregnancy due to it being a molar pregnancy. We are hoping that she will not need the chemotherapy after the surgery. It is really hard because she is in S. Ca. and I cannot be there for her right now. Still no word on the SCS, or the three IMEs that I just had to go through. I think these doctors that do this ought to be ashamed of themselves. Peace to all.
Hi how are you and how was your daughters surgery? I hope you and your family are hanging in there and things begin to look up very soon
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Lisa in Ohio (04-24-2010)
Old 04-15-2010, 08:02 PM #25
Lisa in Ohio Lisa in Ohio is offline
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Thank you for asking. My daughter is doing well, but is coping with the devastating news that she will not be able to carry a child. I appreciate having people to talk to, You all really help much more than can be described. Blessings to all, Lisa
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Old 04-15-2010, 11:10 PM #26
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Hi lisa,
I am sorry to hear about yur struggles and for your daughter's sad experience with her pregnancy and the news that she can't bear children. I know she is in Southern Cal and far from you, but please let her know that she has friends on the message board that are keeping her in their prayers. Though I am sure she is grieving, I am hoping that her fate may have other plans for her that could bring her joy.
Hope4thebest
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Old 04-24-2010, 12:09 AM #27
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Saw Dr Schwartzman on Monday. Katie's involvment will need the coma treatment, however we are trying the 5 day in patient ICU at Hahnamann first to see if she can get some relief in the mean time. Praying that Katie experiences the benefit like so many have....Katie's bladder has shut down at this point and she is near inability to swallow. Cleareance from Cardiology and Physc and then admission
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Old 04-24-2010, 08:34 PM #28
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Lisa,
If the SCS doesn't work there is the pain pump. They can put just about any mix of meds a person would need in one of those & they go into the spinal fluid directly. SCS is not the only thing that can help. In fact I would go for the pain pump before I would go for an SCS. I have just read too many horror stories vs good ones.

DebbyV
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