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!!!

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