Hi.. My name is Bri & I am new to this site & happy to have found it. I was diagnosed with crps/rsd in my left foot over a year ago, it has since spread to my right foot. It took many doctors to finally figure out what was going on. I have had injections, tried many different meds & a month ago I had an SCS put in(I also posted in the SCS forum). I was wondering if any one else has tried an SCS for rsd? My dr thought I was a good candidate for it & I had great success with the trial but not so much with the permanent. I am beginning to regret my decision & wonder if I have created more problems for myself

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...

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

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.

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.

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.

Holly crap Bri,
I sure hope that you get things under control...

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.

Thank you!! I have an appt Friday with a neurologist. I don't think my dr knows what is wrong & doesn't want to accept responsibility that something could have gone wrong. He was a real jerk last week & acted like I was crazy for having these problems.

I've had experiences with drs who don't know what is wrong when there is a problem and who don't want to accept responsibility even if they do know what is wrong. And I have also had drs who try to make it seem like I am imagining these problems or was a hypocondriac, only to find that with further investigation from other drs (preferably drs who don't know the one who may have messed up) that what I was experiencing was real. Getting xrays, blookwork from others drs and by documenting everything you feel and all your dr appts and getting records of all your procedures (in a non-chalent manner) is good to do. I don't think it hurts to get an opinion from a good med mal attorney too. From past experience though, it is real tough to win a med mal suit. I tried but because of some drs covering for each other so that their insurance rates don't go up, it is very hard to win. It is also very time consuming and stressful and can turn drs you already see against you. I've been there, but don't regret it for a second. I stopped my suit because my med mal lawyers couldn't said that my dr met the acceptable level of care. That doesn't mean he didn't screw up, but it'e apparantly enough to cover his butt. I think after what happened to me, they should raise that std of care.I don't want to this happen to anyone else either. At least I hope I opened some eyes to what some drs can do that can hurt people for the rest of their lives, so that they can be more cautious about who they see so that they don't get hurt too. But they try to make the victim look like the crazy one. It's a shame, but that's the way it is sometimes. I hope and pray that whatever you do, that you feel better soon. Your health is most important. Take care my friend. Sincerely, Renee. PS - You are NOT CRAZY. Don't let your dr make you think you are. Believe in your convictions. What you feel is real and you having complications from something. Possibly the SCS. I don't know because I'm not a dr, but I would check into it, after your health improves. Remember too there are statutes for legal action if you choose to take that course. NJ has a statute of two years. And also check healthgrades on any future drs you see to make sure they have good ratings and no malpractice suits against them. The dr that I think contributed to me getting rsd did have a prior malpractice suit against him that he lost, but unfortunately for me, I found out too late. Good luck my friend. With love, Renee.
PSS - I am glad that you are seeing a neurologist on Friday. If you can get a report non-chalantly from your SCS dr's receptionist to give to her, that would be good. You are entitled to copies of all you medical reports and if they ask why, not that they should, you can say its for insurance purposes or if your on SSDI, you can say you need to keep records for them which is good to do anyway. I hope they can help you to feel better. Take care my friend.