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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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#1 | |||
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Sorry to hear that Bri.
I'm told that I'm a good candidate too but I'm not letting anybody mess with my spine if it can be avoided. Besides full body spread of CRPS I have degenerative cerebral atrophpy which already plays havoc with my spine...
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Hope for better days..... Russ okska'sssini ómahkapi'si . |
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#2 | |||
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Hi Bri, welcome to NT. Sorry you have to deal with RSD/CRPS.
I have had RSD for a little more than 23 years. It started in my face and around 7 years ago it started to spread with new injuries. I now have it through most of my body. With so many failed treatments, I finally got two SCS's (cervical and thoracic) implanted in 2011. I had a revision to the thoracic SCS 5 months after implant, leads changed out for paddle leads and moved the battery. They were awesome. They allowed me to get through another 1 1/2 years of work. After that 1 1/2 years, the effectiveness began to wear off. The thoracic paddle migrated and that relocated battery was twisted and hurting. My neurosurgeon thought it best to remove them then do another revision, so I had both SCS's removed this past January. Have you had yours reprogramed? A month is pretty soon to say it will not help. Plus you are still recuperating from the surgery. It took me MANY long programming sessions to get the right coverage and stimulation. There are quite a few on NT that have had success with these helping thier RSD pain. I hope yours starts helping your pain soon! Nanc ![]() |
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"Thanks for this!" says: | Bri594 (03-31-2014) |
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#3 | ||
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Senior Member
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Welcome Bri, I'm sorry you have rsd, but this is a great forum to be on.Everone here is awesome. My pm dr wanted me to try SCS but my neuroloigst and gp advised against it for fear of complications and infection whcih could aggravate my rsd. I was also afraid to let anyone touch my spine because I have scoliosis. Some people here have had it done though with great success. It's a personal decision. I got several opinions from all my drs and then made my decision. I hope whatever you decide to do with your SCS, that you feel better soon. My prayers are with you.
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RSD ME . |
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"Thanks for this!" says: | Bri594 (03-31-2014) |
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#4 | ||
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Junior Member
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Thanks everyone.. It's been 6 weeks now since I had the SCS implanted & still dealing with problem after problem. I have fluid around the battery & they are checking for infection but have not found anything yet.
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#5 | ||
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Junior Member
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Sorry... That posted before I was through writing. The dr suspects that I could have had viral meningitis but is not sure. I had a lumbar puncture last week. He doesn't think any of my problems have to do with the implant. Back to more doctors this week.
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#6 | |||
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Holly crap Bri,
I sure hope that you get things under control...
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Hope for better days..... Russ okska'sssini ómahkapi'si . |
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"Thanks for this!" says: | Bri594 (03-31-2014) |
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#7 | ||
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Senior Member
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If I were you I would get second and third opinions about what is happening to you. My neurologist didn't want me to get a SCS because of concerns of things happening with one, like what is happening to you. The dr may say it's not related, but in my past experience with botched surgeries and misdiagnosis, I would get more opinions and maybe seek med mal lawyer for a free consult. I'm not a dr but something sounds wrong about what your dr said. How does he know your infections are not because of the SCS? Most importantly I would seek another dr maybe a neurologist to get yourself healthy again. My thoughts and prayers are with you. Love, Renee.
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RSD ME . |
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"Thanks for this!" says: | Bri594 (03-31-2014) |
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#8 | ||
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Junior Member
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Hi Nanc, I am fairly new here also and am up for both neuros and you have. You didn't mention anything going wrong with the cervical one. Is everything ok with that neurotransmitter? It seems as the both of you have had problems with the thoracic one and I have read or others having the same problems also so I am leaning towards the infusion pump instead because they said I am a likely candidate for that also. Any comment
Hugs to all and I hope your days have tolerable pain. Quote:
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#9 | |||
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