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RSD/CRPS

Posted by Anonymous @anon37227499, Nov 6, 2011

Does anyone have RSD/CRPS? Do you know if there's a current research study for this at the Mayo Clinic?

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grannyzoo | @grannyzoo | 1 day ago
In reply to @dcanada54 "@grannyzoo who did you see at UNC? I’ve been going to Duke the past 14 years...." + (show)
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@grannyzoo who did you see at UNC? I’ve been going to Duke the past 14 years. Even though it’s been on my medical records it was never explained or treated. Thank you.

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@dcanada54 I saw Dr Sainburg and Dr chidgey. They put in my spinal cord implant. After that was put in I ended up seeing Dr Russel Davenport in Charlotte who is the anesthesiologist that specializes in PAIN MANAGEMENT. I cannot say enough good about this man! He is incredible. I want to encourage anybody with CRPS to find an anesthesiologist that specializes in pain management. (stay away from PAIN MANAGEMENT doctors that herd you in like your cattle. They just don’t listen and all they’re doing is getting a paycheck .) What Dr. Davenport has done with me is just this side of a miracle. I also want to encourage folks to watch their diet. First off, get off of all sugar. And I mean, all sugars. It causes inflammation. You will have a withdrawal headache that lasts several weeks. I ate a small piece if candy daily and gradually got off of it. I want to encourage you to also get off of red Meats. Eat fruit and vegetables, fish and white meats. Stay away from caffeine. Eat nothing processed. There is a group up in the New England area that gathers together for CRPS meetings. I got their blog. Look them up. I found out about them on the Mayo website. Keep moving! I know it hurts like the devil and there’s nothing we can do about it other than fight it with exercise. Swimming helps. I go to PT. Drink lots of water. I have a Boston Scientific Implant and it has its pros and cons. The part I like about it is that I can get an MRI. The down part about it is the staff is not well trained. It is very irritating to get lip service instead of the correct answers. When I went to UNC, that Representative hooked my legs up backwards. It took six months to get this resolved, and I ended up finding someone in the winston-Salem area of NC who figured out what was happening. My original rep is still with them in the UNC. Sad. That was extremely aggravating. Do your homework if you’re getting an implant talk to your anesthesiologist who specializes in pain management for guidance. We are all different but this is the route I went. As you know, knowledge is very limited about CRPS in the medical field.

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harrie123 | @harrie123 | 5 hours ago
In reply to @cmp4001 "My daughter was diagnosed with RSD/CRPS 8 years ago after she was in an accident. It..." + (show)
Profile picture for cmp4001 @cmp4001

My daughter was diagnosed with RSD/CRPS 8 years ago after she was in an accident. It still took them over a year and many many doctors to tell her what was wrong. Since then she has been in a walking boot and uses a cane. She has had a spinal stimulator put in that had to be done because the anchors in the back came loose. After they came loose the second time she had a neurosurgeon surgically implant the leads in her spine. He butchered her. Left her with three 4-5 inch incisions that should have been no more that 2 inches. Did not remove all of the old leads because it was too much work. She developed an infection right away. After having this last implant she was not getting the relief she should have been getting. Doctor said they did not need another MRI. Her pain doctor ordered it and found that the machine was not placed where it was directed to place the pain specialist. After having this last machine for 5 months her legs were cramping she had to go to the ER and they admitted her to figure out how to get the cramping to stop. Needless to say the machine can not be turned on. She has been trying to get another doctor to remove the machine and put it in the correct spot. NO ONE WILL SEE HER. Her pain doctor told her that she can not go back to the doctor that did the original surgery. What he wants to do is go in from the top and her pain doctor said that it could paralyze her. I have seen people in pain but never the amount of pain that she is going through. Now our state is telling her that they are going to take her pain meds away and she will have to survive on almost nothing. I can not stand back and watch a 35 year old woman be a victim. She deserves better. She was a nurse and can not practice but still has to pay on her loans that were private. We have contacted Mayo hoping that they will be able to help. There must be someone out there. She is at the point that she does not want to continue living.

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@cmp4001 What an awful story. I am so sorry.
I am having to get my SCS battery replaced as it is 6 years old and not holding a charge.
My original contact was with my Boston Scientific, the brand of the stimulator. He made an appointment for me with the surgeon who they use for replacements such as my situation. Have you contacted the representative from the brand of stimulator you have. There are designated procedures in place for these issues? It worked for me.
Regarding RSD/Crps, I had my first case after a minor car crash that did enough damage to my THUMB that required surgery. From that I developed RSD! VERY PAINFUL. Desensitization therapy over many weeks did resolve the pain.
I am currently experiencing another CRPS event in my hand after a broken wrist. And so we will see what the doc recommends now. Again, I am so sorry.

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