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 02-29-2012, 02:50 PM #11
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Yes, Dr. Campbell and the Blaustein pain Center at Hopkins. Hopkins has a good reputation for good reason I'm sure but my experience was the whole entire staff at the pain center where plain old miserable. The two ladies at the counter were rude, the nurse who grabbed my wife's arm to place a blood pressure cuff without saying a single solitary word to either of us put Suzy into severe pain! And because she objected with tears running down her cheek, this nurse ran to a doctor and complained. This young, rookie looking doctor (not Campbell) told Suzy she will have to have her blood pressure taken using her sore arms. I chimed in, told this guy she has RSD in those arms, can you take her pressure from her legs or wrist perhaps. Nope, you've got 10 minutes to think about it and left the room in which we responded by leaving, never to return. I'm glad we did because I am absolutely sure if Suzy was to see that educated quack Campbell she would have been worse off. And I may have given him more than an ear full. ............... I still get angry thinking about it.
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Old 02-29-2012, 04:21 PM #12
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I am so glad reading all these reports, that the actually very nice young neuro-immunologist and I were in agreement that I was already receiving excellent care for my pain and there was no point of referring me to their pain center while I was in town. Where my "objectives symptoms" were not nearly as prominent as they are today, I have little doubt that I would have walked out of there with an official Johns Hopkins Dx of primary conversion disorder.

And at least Campbell inadvertently spared me that fate, by referring my file - which the rhuematologist had personally sent to him - to a neuro-immunologist.

Funny how many of of have a point of connection there. All roads lead to . . . Caligula, or at least did for some time.
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Old 02-29-2012, 07:07 PM #13
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Do you remember what year that was and the doctor's name?
Dec 09. Arrogant guy with a shaved head in his late 40's.
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Old 02-29-2012, 07:12 PM #14
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Ballerina..
I would pay good money to have you do the same thing to the doc at UVA who told me my daughter had Munchausen and I had Munchausen by Proxy. Then DENIED saying it when confronted despite it being in my dd's records.
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Old 02-29-2012, 07:44 PM #15
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Originally Posted by dreambeliever128 View Post
This is for a friend. Has anyone ever went to J H. for RSD?

Ada
Hi,

I went to the Blaustein Pain Clinic, saw Dr. Raja and was not pleased. Most of the time was spent with a fellow telling me that they couldn't do anything for me and that I have too many drug allergies and have exhausted the treatment options. I was shocked because I'm pretty sure that Dr. Raja is on the Scientific advisor board of the RSDSA. He is supposed to be a pretty top name when it comes to RSD. I have heard.

Lindsay
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Old 02-29-2012, 09:18 PM #16
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I also saw Raja who was less than impressive. I had to explain to him what Low Dose Naltrexone was. He had no clue-thought I was being treated for alcohol or drug addiction. When I explained to him that in a low dose, such as 4.5 mg. it modulates activity of glial cells to act as a neuroprotectant and suppressant of inflammatory responses, he looked at me like I had two heads. Also seemed a bit embarrassed in front of the resident that the patient had to educate the doctor regarding a treatment for chronic pain.

The only thing Raja could offer me was a second Spinal Cord Stimulator, despite a detailed report from a top neurologist detailing the action of the spread caused by the first one that failed. When, in utter disbelief, I asked Raja to produce solid research demonstrating the safety of SCS for CRPS he became defensive and indicated that there was noting he could offer me. Sadly, the resident in the room looked shocked that Raja would brush off the report of the neurologist and additionally that he had no response to my request for proof of a treatment that had already maimed me.

When it comes to the Blaustien Pain Treatment Center at Johns Hopkin's it is consumer beware!
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Old 03-03-2012, 08:02 PM #17
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Thanks for the replies. I will let my friend read this. I have heard the same rave reviews about the Mayo Clinics. LOL When you don't get any good reports about something then you know it's most likely true.

Ada
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Old 03-04-2012, 07:34 AM #18
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Originally Posted by betsykk View Post
Dec 09. Arrogant guy with a shaved head in his late 40's.
Might the arrogant doctor at the John's Hopkins Blaustien. Treatment Center who failed to provide you with approprite tratment for you Complex Regional Pain Syndrome be Dr. Michael Erdek?

If so this is very scary. Dr. Erdek is listed as the director of fellowship training at Blaustien.
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Old 03-04-2012, 06:15 PM #19
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Originally Posted by ballerina View Post
Might the arrogant doctor at the John's Hopkins Blaustien. Treatment Center who failed to provide you with approprite tratment for you Complex Regional Pain Syndrome be Dr. Michael Erdek?

If so this is very scary. Dr. Erdek is listed as the director of fellowship training at Blaustien.
omg...after 2 1/2 yrs I can easily remember that was him! he was incredibly dismissive the very minute we said we were investigating scs and not there to schedule. we just wanted to make sure we knew enough about them to know it was not right for our daughter. his 'argument' for it was that 1 out of 3 patients was relatively happy after 3 yrs.
by the time we got home 6 hrs later, they had us approved for the surgery through our insurance and were calling to schedule the trail. unbelievable.
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Old 03-05-2012, 09:46 AM #20
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omg...after 2 1/2 yrs I can easily remember that was him! he was incredibly dismissive the very minute we said we were investigating scs and not there to schedule. we just wanted to make sure we knew enough about them to know it was not right for our daughter. his 'argument' for it was that 1 out of 3 patients was relatively happy after 3 yrs.
by the time we got home 6 hrs later, they had us approved for the surgery through our insurance and were calling to schedule the trail. unbelievable.
One out of three? If these doctors' wives, mothers, sisters, daughters had RSD would they take those odds? What was the condition of those unhappy 2/3rds after the SCS? :
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