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
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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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Old 08-29-2016, 10:09 PM #2
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Samantha,

I am sorry to hear the bad news. The only two university centers that are coming to my mind at the moment are Drexel, and Stanford. I don't know if you have considered either of them.

Please keep us posted when you can. I will keep you in my thoughts and prayers.
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Old 08-29-2016, 10:18 PM #3
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I'm going to suggest Stanford because of the level of research they are doing in CRPS/RSD right now.
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Old 08-30-2016, 03:49 AM #4
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Well, I'm sorry to hear all that.

I'm in a different country so no help to you there.

Just wanted to wish you well! Hope you can find a hospital.
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Old 08-30-2016, 10:31 PM #5
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Originally Posted by PurpleFoot721 View Post
Samantha,

I am sorry to hear the bad news. The only two university centers that are coming to my mind at the moment are Drexel, and Stanford. I don't know if you have considered either of them.

Please keep us posted when you can. I will keep you in my thoughts and prayers.

Does Drexel actually treat as a hospital, the way I thought it was, is that its a teaching school and they do all treating at hahnemann hospital next door but maybe iam wrong if so that would be great. I might even look into Hahnemann hospital as I do know rsd is treated there just dont know about sarcoidosis.

Thanks everyone for your help and support
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Old 08-31-2016, 09:43 PM #6
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you need to go to mayo
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Old 09-04-2016, 10:43 PM #7
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RSD31 does mayo treat full body rsd well and do they do all the treatments such as ketamine and everything. I do know they probably are good when it comes to heart and lung issues as my cardiologist had worked there and knows all the drs I would need to see and would set all the appts. so I would have to go to 1 and then wait for days for the other and try and set up for the surgeries soon. But my worry is the rsd, my dr I have here knows how to get me in and out of surgery without going backwards I deal with a flare for a week or 2 but isnt bad. I would just hate to go somewhere that cant understand all 7 conditions and realize I come as a package with all my issues and they all need tending to at the same time. I do know the heart and lung issues are whats going to kill me and I have about a 5 year life span just with the lungs unless I get transplants and my heart is any day until all the surgeries and treatments need are done then would like my heart have 5 years unless I get a transplant. I have made an appt. at Hahnemann hospital with an electrophysiologist to see if their heart teams and pulmonary teams can handle what i need, I am looking into them as I know shwartzman use to work there and know some of his colleagues have taken over so with ask the heart drs if they were to help me if their rsd specialists can help with the pain, I did call the pain drs office about the help I need and waiting for word back. But if Hahnemann hospital doesnt work then will be going to mayo. If any one has been to mayo for pain if you can share your experience so I know what they r like. Thank you all for your help
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Old 09-30-2016, 01:53 AM #8
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Stanford University Pain Clinic. I just got out of treatment. Its hard to type. They treat my full body CRPS with ketamine infusions.

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Old 10-01-2016, 11:12 PM #9
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First...I am sorry to hear all that you are going through. I agree that your FIRST priority needs to be to address the life threatening issues. I've always said I can get through anything with RSD because I know (despite how it feels) that it is not killing me and that knowledge often gives me the strength to push through when I need to. So I really strongly believe that you should go where they have the best chance at success to treat your life threatening issues.

That out of the way...Mayo is not a good place to be treated for RSD of any kind let alone full body unless something has changed in the past few years since I looked into it. They do a lot of wonderful work there...but I've heard nothing but disappointing stories from people who went there seeking treatment or even just diagnosis for their RSD.

Hopefully...one of the previously mentioned places can take care of all your health concerns. Take care and keep us posted.
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Old 10-02-2016, 02:34 PM #10
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Quote:
Originally Posted by catra121 View Post
First...I am sorry to hear all that you are going through. I agree that your FIRST priority needs to be to address the life threatening issues. I've always said I can get through anything with RSD because I know (despite how it feels) that it is not killing me and that knowledge often gives me the strength to push through when I need to. So I really strongly believe that you should go where they have the best chance at success to treat your life threatening issues.

That out of the way...Mayo is not a good place to be treated for RSD of any kind let alone full body unless something has changed in the past few years since I looked into it. They do a lot of wonderful work there...but I've heard nothing but disappointing stories from people who went there seeking treatment or even just diagnosis for their RSD.

Hopefully...one of the previously mentioned places can take care of all your health concerns. Take care and keep us posted.
Great point that the first priority needs to be life threatening issues. In a perfect world we would expect everything to be right there for us. Unfortunately, sometimes we need to prioritize and life threatening situations need to be right at the top.

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