Hi Jim and suzy,

Another word of caution about Johns Hopkins Hospital Blaustein Pain Treatment Center. When I requested another doctor because of the horrendous treatment I received I was told that I would have to file a formal complaint to have my request considered. I filed the complaint and received a written response that I would not be assigned another physician and that if I was truly unhappy with my care I could go to another Hospital in Baltimore and was provided with the address and contact information.

Instead I chose to keep my followup appointment with the offending physician and presented him with a lengthy written record of my prior visit, and reports of consultations with other physicians who refuted his incorrect diagnosis. My husband was with me and took notes. The reports refuted Hopkins diagnosis of clinical depression, a diagnosis made by a neurosurgeon who was not qualified to make such a diagnosis. The reports indicated that I did in fact have Complex Regional Pain Syndrome. I shared with this physician the impact of his examination on my prior visit. He had grabbed my arm despite my pleas to stop and roughly manipulated it causing a nasty pain flare which resulted in a fall into some equipment. The bruises caused by that fall were noted the next day by my physical therapist. The doctor offered me an apology, and suggested that I use ice. (CRPS 101=no ice)

After my appointment I once again requested a new physician because, although I received an apology, I lacked trust in this physician. I received written notice that I was being terminated from the Hopkins pain management program and I was encouraged to consult with a physician in Cleveland Ohio. Not real convenient for someone living in Maryland.

I have now filed a complaint outside of Hopkins so that CRPS patients coming behind me and other who have had similar experiences might have a better outcome.

I have learned that sometimes you receive better treatment from a private pain treatment practice rather than a large teaching hospital.

Now I have a great team but it took some hunting.(neurologist, pain management doctor, physical therapist). One of the tools I used was to google "patient reviews of (doctor's name)".

Don't give up until you find the right doctor patient fit!

Teri

And you are right Teri, I search and research before I consider where I want to go. US Dept of Labor only accepts Drs that are approved by them. I did find my jewel of a neurologist on that list, but I had to look up a bunch before I got there. And the less info, the less time I spend on them. The doctor I chose had his own website, patient testimonials, his personal perspective on pain management, which was not throw pills at it until you pass out.

Thanks for passing on the great advice and letting others gain from your experience.
pat e

Perhaps you should report the doctor to the Hospital's Board?

The reputed "key keeper" of the ketamine program at Boston's Beth Israel Hospital has done essentially the same thing to about a half dozen Rhode Islanders I know. The BI shut their ketamine program to new patients about 3 years ago. Since then, anyone going up to their Arnold Pain Clinic is typically diagnosed with anything BUT RSD (I guess they figure that guarantees that they don't have to offer them treatment). And they are mean, mean, mean on top of it. I left there in tears, and later found out there have been many others like me. After my first appointment, I wrote a long letter, refuting the doctor's written report which was full of errors and inaccuracies. At my second appt, I found that they had just tossed the first letter I mailed, and could care less what I thought....my husband and I wasted our time trying to find any kind of decency in any medical professional in that place. Ugh...it was not a fun time.

I believe that the "tone" of an organization starts at the top, with top management. Either they care or they don't.

Sandy

Hi Sandy,

So sorry to hear of the abusive experience at Boston's Beth Israel. Hopkins tried to toss my letter also. I sent a copy of the Hospital Patients Right Policy with my response as well as the consultation reports from outside physicians who refuted Hopkins so-called Complex Regional Pain Syndrome authority to the CEO. The entire package is now part of my permanent medical record. It is particularly important to have every error and misdiagnosis addressed in the medical record, particularly if the errors, omissions and misdiagnosis is generated by a leading teaching hospital.

What I do now to cut down on errors and omissions is to prepare a written progress note to be attached to my medical record when I go to each appointment. I also request a copy of the past months medical record each time I go. This has eliminated errors and omissions. Additionally, this process assures that I always have a complete current medical record.

You are so right about the tone at the top of the organization. My hope is that my complaints to outside regulatory agencies and the required investigation will encourage the physician who abused me as well as the Hopkins leadership, which perpetuated the organizational climate that permitted and supported that abuse, to adhere to their much publicized patients right policy.

I am so happy that you have found a safe place for treatment!

Teri

Hello Jim,

I know central Indiana is probably a good 12 hours from you, but Dr. Nordman is the best. It took about 6 - 8 weeks to get in, and it was well worth the wait. He suffers from chronic pain himself, so he knows what it is like. He is a very compassionate and kind man. Over the last 6 years I have seen 3 pain mgt drs. and Dr. Nordman and his staff are the best!

Take care,

Rhonda