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 08-29-2016, 07:56 PM #1
alaska49 alaska49 is offline
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Join Date: May 2009
Location: Pennsylvania
Posts: 221
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alaska49 alaska49 is offline
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Join Date: May 2009
Location: Pennsylvania
Posts: 221
10 yr Member
Default A good university hospital for full body RSD

Iam asking for help in finding a good university hospital that does a good job with full body and internal RSD. I have a great hospital that is treating me now and has been for the past 8 years with ketamine infusions, meds ect. But now 5 years ago they found I have the autoimmune disease sarcoidosis but the past year has gotten severely bad with my lungs the way they are failing they gave me 2-5 years but just the past month found its severely in my heart which in Feb. already had a cardiac arrest and the Drs said the way it is now I could drop any moment and the hospital I am at now they cant help me. I need to go somewhere they can do ablation therapy where they burn away the bad tissue and coagulate it and then put in a defibrillator but depending how bad my heart and lungs are may need transplants if Iam willing to go through that hard of treatment. But to do all these surgeries and treatments I need a place that is also able to treat my RSD good enough such as ketamine infusions, epidurals, blocks, high doses of meds or even have to put me in a medical induced coma if needed like the hospital Iam at now does when I have surgeries or treatments done when things are needed. My heart Dr. said I need a place that I have teams of cardiologists, electrophysiologists, pulmonolgists, neurologists, Rheumotologists, Anesthesiologists, Internists and a Transplant team for heart and lungs if needed which the hospital Iam at now cant do.
If anyone knows of a university hospital that treats full body rsd well and can do the things I need with my other diseases I would appreciate any help. I will not go to the Cleveland Clinic as when I went there for my RSD they told me it was make believe and in my head so wont go through that again. My heart Dr. is suggesting Mayo Clinic in Minnesota does anyone have ideas how they are. I know I need to take my heart and lung issues more serious as its whats going to kill me any moment but if I cant find a place that can take care of all 8 diseases I have especially the RSD too then it would be hard.

Thanks for any help anyone can give!

Samantha
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