The big doctor hunt
 

Well, Suzy is now on medicare and her current doctor of 3-4 years does not except it. Her doctor recommended several and we went to the first one today. I researched this doctor and came to the conclusion he's selling goods across several states on the east coast like spinal stimulators, blocks etc. This office, two weeks ago and repeated by her current doctor, said they will maintain Suzy's current treatment and will see the main doc. Well, she saw an associate instead who said we don't do meds, we do stimulators. So, here we go again. I guess everyone can tell I dread this.

The big question is, does anyone know of a good RSD doctor of any field around the Washington DC area who isn't into invasive treatment for a RSD patient of 10 years? Thanks a bunch for any replies. :)

jim

Hi Jim,

I recommend a consultation with Dr. Damian Freas of Advanced pain management in Annapolis Maryland. I have been seeing him for almost a year and can guarantee you that your wife will not be a CRPS patient, but an individual with CRPS. You and your wife will be partners in the development of her treatment plan. Given the spreads of CRPS I have had in a rather short period of time, Dr. Freas ordered a virtual colonoscopy rather than the standard invasive colonoscopy. He is very attuned to weighing th risks of any invasive procedures.

A bit farther away from you is Dr. Robert Schwartzman in Philadelphia. (His wait list however is quite long.)

Hope this helps!

Teri

What a drag Jim.

I would make sure you send a follow up note to the that MD office repeating those issues....and that it causes more stress and pain for an RSD pt to go to appointments that won't lead anywhere. Also let her previous doc know so he'll stop referring similar cases to the stim shop.

Jim,
I agree with Finz's suggestion. Have you tried contacting the main physician at the new Dr's office about continuing Suzy's previous non-invasive treatments. If that fails, maybe contact Suzy's previous physician and try to get that Dr to be her advocate. After all, that Dr referred her to the new Dr in the first place and you would think he could reach out to the new office either by phone or written request. I'm sorry you two are experiencing such a distressing issue. I hope this is resolved ASAP. Or try asking for a patient advocate @ the new place n tell them your issue. I have had a lot of luck with getting the care I need but I'm very vocal and will voice my concerns to anyone at the office and everyone...even had to call every hour @ one office before just to get the care I needed. Let us know how it works out and I will be thinking of you two.
Sarah

I am not familiar with WA but my best advice is to call a teaching hospital in your area there pain clinic anestesologist dept. After I saw people like Stanton Hicks at Cleveland Clinc and was not happy with the care I called a hospital in my area and they suggested a doctor who dealt with rsd a lot. He was the best out of all I have seen. He was not pushy and looked outside the box. Also he did not have his thing I call it like many other rsd docs do. Like Ketamine or scs he looked at you as an individual. Hang in there

Hi Jim and Suzie,

I don't know the DC area but I have heard John Hopkins has a wonderful pain department. I hope this helps.

Gabbycakes

Hi Gabbycakes,

I too had heard that the John's Hopkins pain management department was an excellent place to seek treatment for RSD/CRPS. After a wait of several months I was finally seen by a veteran physician and eagerly awaited a treatment plan after having been diagnosed with CRPS by four doctors prior to Hopkins.

To my horror, instead of an aggressive treatment plan, which could have put my early CRPS into remission, I was instead told that I had "garden variety arthritis" and major clinical depression which was causing my somatically based pain. I was then told to see a specific Hopkins psychiatrist for my "major depression", a psychiatrist that was known not to accept my insurance and would have cost me almost $800.00 just to walk in the door. I indicated to this highly esteemed neurosurgeon, who was not qualified to make a diagnosis of clinical depression, that I lived with a psychologist and that my husband did not believe I was suffering from clinical depression. I requested an aggressive treatment plan for my CRPS but was told that my symptoms of level 10 pain, falling attacks, profuse sweating, hair and nail changes, color changes, severe allodynia and insomnia would best be treated by this specific psychiatrist, who specialized in women's somatically based pain. This neurosurgeon suggested while waiting to see the psychiatrist that I use ice for my symptoms.

Within a month a colleague of my husband who sought treatment for CRPS from another veteran Hopkins pain management physician was pressured into an invasive procedure which ignited a spread of her CRPS and she became wheelchair bound.

This woman shared with us that her friend had an experience similar to mine with yet a third Hopkins physician.

The last time I checked the web site of the Johns Hopkins Blaustein Pain Treatment Center, all three doctors were still there.

For me RSD at Hopkins = Really Scary Doctors. Be very cautious.

Teri

Sorry for the late response. My computer at home is giving me problems.

ballerina, Thanks for the info on Dr. Damian Freas in Annapolis, we'll put him on the list. It is a little bit of distance from us because we are in NOVA but still within the area somewhat! It seems it would take 2-4 years to see Dr. Robert Schwartzman. What we need is a doctor my wife can see at least once a month. Thanks again.

finz, We wont be going back to that doctor anyway. Suzy is still going to her previous doctor until she finds the right one. I will tell her again that Suzy is not interested in any invasive proceedures or gadgets, especially from a pain center calling itself non-invasive pain center run by a doctor who lives in a state 100 miles away. :)

Good advice Swatgen27.Well, I try to be the vocal one but many times in the past I've froze because quite frankly some of these docs don't seem to have a clue and it strikes me as odd. My wife will get vocal but it's not in her nature and she (to me) comes off to the doc as a possible mental case which gets me even more angry. She's not mental but shy with people and has been forced to become more aggressive because of the pain.

daniella, Suzy has been to 2 hospitals for treatment. Johns Hopkins and George Washington Hospital in DC. The issue with the hospitals is Suzy has been infected with RSD nearly 10 years. She is through pretty much with experiments, risky techniques etc. at least at this point in time.

gabbycakes & ballerina, I realize many people have had good results at Hopkins but ours was a nightmare. When we went to the pain center at Hopkins several years ago Suzy was not getting any help from any doctor in our area. We went to Hopkins to have a consultation with a particular doctor. Suzy was in severe agony from nearly 4 years without treatment. A nurse rudely, without saying a word, grabbed suzy's damaged arm and proceeded to wrap a blood pressure cuff around her upper arm. Big mistake. Suzy screamed in pain and pulled away. I calmly explained to the nurse Suzy has RSD and that is her bad arm and then I asked if they had a wrist cuff instead. Without a word from the nurse she stormed out of the room. A young doctor then entered the room in which I explained that Suzy can not have that cuff wrapped around her upper arm, perhaps the wrist or ankle. The young doctor then said that he will not tolerate anyone being rude to the staff and gave Suzy 10 minutes to think about getting her blood pressure done the way they want to do it. We then left. That young doctor was not the doctor we were there to see and they billed us $500 dollars in which I refused to pay and never did. All this took place within 5 minutes. Hopkins still maybe an option perhaps if it is a different doctor in a different pain department.

Thanks again everyone and have a pain free Spring!!! :)

Hi Jim
 

It's just so disheartening to read what you are going through - bummer. It shouldn't be that hard.

Shame on Hopkins. But if it is close by, you may try going back. Hopefully you will get bettter staff people this time. If not, prepare to stick around until you do. Perhaps change your strategy - don't let anyone (especially some young doc with an ego bigger than his brain) tell you what to do. Find his boss and maybe follow through this time until you get a doc who cares.

I have been amazed at the stories I have heard from members of my support group in my state about ignorant young (and some old) docs. Mean, mean, mean...All we can hope is that karma is a *itch...

The very best to you and Suzy. Hang in there...XOXOX Sandy

Jim and Suzy,
I apologize I must of missed the post that you had been to Hopkins before. What a terrible experience.

Gabbycakes

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

St. Francis Pain Clinic, Indianapolis
 

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