Wonder if md's really believe in RSD?? Why?
 

Why is it so difficult to get pm doc and Gp together to discuss a game plan for my health?? It's not them missing work or getting a bad work record?:confused:

They can't cure it..so they feel like failures...living in denial..:wink:ego.

Amen!!! Yes for 1 my gp is about 75 and my pm is about 30 and from India or somewhere!

Hi,
 

My opinion of PM Drs. is below the scale of 0. They most likely think since they are the ones suppose to deal with cronic pain, they have no reason to talk to PCP's.

I do think though you are right about it. My PCP talks to a lot of my Drs. that have helped me. My TOS Dr. worked with him to help get me better and others have to. The 5 PM Drs. were ignorant of RSD in my opinion. The U of C was the worst. To me learning hospitals are good for using people for guinea pigs.

You asked if they believe in RSD. I believe so, if not they are sure using it for a big money maker in pills and SCS's and Pain Pumps.

Ada

Ada,

You're correct about learning hospitals.
You always see me "pushing University hospitals", but, ONLY for a diagnoses, and to get steered to conservative treatment.

This is not a disease that wants to be surgeried and pumped and have ribs out, etc. It needs to be studied a bit first.
Why?
Because, we're ALL different!

Our medical system in this country *america has become a "machine" for things like say, colon cancer.
Cut it out.
Chemo it.
Deal with it.

RSD on the other hand, is a toughy, because I've NEVER heard of anyone dying of it, directly.
And, it has no certain cure.

So, if you're a doctor, what do you do?
You must hunker down, and become a "Manager".

Did someone say "EGO"?

Haha!
Love it!
:cool:

pete

Totally agree. That's why it's so important to find someone with patience and self-deprecation, in addition to full academic qualification in Pain Medicine.

And on the point of frustration over not being able to do anything, check out Dr. Schwartzman's latest article that was just linked to at http://neurotalk.psychcentral.com/thread88983.html

Mike

Pain Management is a big ticket money maker right now. Just my opinion. Gargatuan egos and big bank accounts.

MsEliie, I so agree with you. I think my PCP gets angry with my PM. He got mad enough he took back control over my pain management & left him to deal with my SCS & thats about it. He doesnt listen to me. I think he just just likes to hear himself talk & sound smart sometimes. Too bad the last decision he made about me got overruled by not one but two of my doctors. So much for his Ego! lol!!!
Hugs, Denny

I always say I wish all the specialties I would see would do a team approach. Each one only looks at there area to refer out and never follow up. I often wonder why they go to school for so long and study everything when they never will go outside there box so to speak. I feel for myself with all my conditions and things that have krept up since the original rsd pain in the leg that for it to not be connected is just so odd but no doc connects the dots.
I think a good PM doc after I have seen many is one who is willing to work with you. It is not just one thing or the highway. Like I saw one pain doc who would only do a scs and when I said no he said he could not help me but there were so many lesser things I had not tried. What I feel is many doctors are afraid of things that they don't know about or don't have the quick fix for. The ego docs I often feel are the ones from the top hospitals. There in and out so quick as well. I even had one doctor say to me just because a place is known does not mean it is good. I have no idea but I hope you don't give up and if these people won't help you try to find someone who will. It is a long frustrating battle and in pain is even harder.

Don't agree that there's a correlation between ego and top universities/hospitals. I've been to a lot of places, including Cedars Sinai, U.S.C. and a neurologist at UCLA here in LA, the Mayo Clinic in Rochester MN, Drexel Univ. College of Medicine in Philadelphia and Johns Hopkins.

Currently, my P.M. is a blessed man who is the chief of Pain Medicine at U.S.C., triple boarded (psychiatry, anesthesiology and pain medicine) and an utterly compassionate human being,

On the other hand, the most egoic man I ever met in my life is a PM doc who left UCLA to set up his own shop; my surmise from what I was told about billing shortly after he left UCLA is that he did so, at least in part, so that he could make more money by refusing to accept insurance reimbursement.

As to the Mayo Clinic and Hopkins, you've got all types. I really think it's a matter of the individual doctor/department. Of course growing up in Rochester, I may have I bias towards the Mayo Clinic, but I have seen wild variations in personality through the years in one department (psychiatry: some adopt an extremely paternalistic approach, some don't) and have found others to be consistently aloof (neurology and unfortunately the Division of Pain Medicine), while receiving consistently compassionate care in other departments, including pulmonology, cardiology, and hematology/oncology.

And finally, I doubt that you would find that there are many patients of Robert J. Schwartzman who would give him bad marks for bedside manners. That said, his operation isn't really set up to provide continuing care to those who don't respond to the experimental treatments he has running, but I don't see that as a matter of ego, just efficiency. (Unlike the PM just out of UCLA who declared that I didn't have RSD - about 14 months after I first became ill, and 2 or 3 months after the blocks stopped working at another hospital. because I didn't respond to HIS block.)

Mike

Hello,

I have only been dealing with this for 9 years. IMO they believe it exsist. However, I think pride keeps them form communicating with each other. If they don't have rights at the same hospital and don't know each other I think they may even be less open to talking with each other.

I got lucky and my GP and PM did talk and they are an hour apart from each other. It made a hugh difference in my care. I have even got lucky and my ortho doc, who just operated on my ankle on Monday, called and talked about RSD and how to prevent a flare in pain with Dr. S in Philly. My ortho doc has a HUGH ego but I trust him. Doctors egos and pride get in the way of them networking like some people do in the business world. I agee pain management is a money maker for drug companies who in my opinion drive health care in this country.
Take care,
Sherrie

Hello Mike

I love to visit in CA.

Dr S in Philly does have good bedside manners. His only option for treatment is ketamine because that's what his research program is funded for. His knowledge in CRPS is vast. I failed with the ketamine (full body RSD for me). However, he is alway availiable for questions from me or my doctors. He has become a source of knowledge that can translate to managed care (in a way).

Like you I have been to some of the best clinics in North America and I have seen my share of doctors. Some just don't have or want to take the time to get involved with something so complex. I use to hate the term complex, I have grown accustom to it over the years. Some want it to be something they can treat so they treat for anything but CRPS.
We ride an emotional roller coaster with this condition and sometimes the emotions are flared by the frustration over doctors.

Take care,
Sherrie

I did not have good experience at UCLA. I am not saying all doctors at these hospitals have a big ego but some do. I even had one doctor not at UCLA but in Ca say to me when I was asking ?'s didn't I see him on TV. Like I should not ask ?'s because he was on TV for this condition. I am not saying he is not a good doctor but it is also how one protrays themselves if that make sense to make one feel comfortable with working the doc. I know at UCLA the doc suggested the scs and answered no ?'s really and sent me home with a video. No alternative options at all. Does not make one feel at ease in a procedure. I could care less about bed side manner. All I want is someone who listens,gives options,and is skilled. Also one that won't give up.

Daniella -

I may have mispoken. My neurologist has a private office at the 100 UCLA Medical Plaza Building, and while a member of the UCLA faculty, now as a Clinical Prof. of Medicine and very active in it's admissions committee, does not practice through the Department of Neurology per se, although I've been sent there for various special studies. I have never beeen through the UCLA pain program, and from everything I've heard, wouldn't recommend it to anyone. I would PM you his name, where he meets all of your specifications, but he is retiring.

I continue to stand by my recommendation of Steven Richeimer, MD, at USC, and will forward his contact information to anyone who's interested.

That, and I've heard from a number of folks who have all figured out the identity of "Ego Man." Small world.

Mike

I am not in Ca anymore and I try to not talk bad about any place or doctor unless there is something major because I would think they have helped someone and I would not want anyone to miss out. I did not attend the pain clinic but saw an anestesolgist at Ucla. I did do the Cleveland pain clinic well for like 5 days. I do feel there is a place for programs like this but there needs major revamping. I like the idea of mental support and physical rehab but needs to be more tailored to the needs of each and also with some pain control other then just mental coping skills

My wife who has full blown RSD did the mental coping thing for 4 years with plenty of advil thrown in. She finally caved in and I desperately seeked out doctors every where around us and ended up at a teaching hospital in Baltimore with the initials J.H.

It was one of the worst experiences my wife and I ever had. It all started when we checked in. With all her records in hand and MRIs etc. they ask for her referral in which we faxed to them weeks before from which they set the appointment. No, I don't have the referral , you should have the fax, in which they said they didn't. I said they must because you set the appointment from the fax the PCP faxed you. I tried calling the PCP to resend the referral in which the whole office was out to lunch for an hour. The receptionist said thats too bad you must reschedule I then pulled out my credit card.
Waiting in the examination room my wife was in so much pain she held out her arms away from her body like they were on fire and lifting her feet off the floor at the same time while sitting. Her teeth were clinched and eyes were bulging when a disgruntled nurse rolled her blood pressure machine into the room and grabbed Suzy's arm to wrap the cuff around without saying a word. You can imagine what Suzy's reaction was and told the nurse you can not wrap that cuff around my arm and pump it up! The nurse insisted, I chimed in and told her she has RSD and is in severe pain and then mentioned if she has a wrist cuff instead? The nursed huffed and rolled on out of the room. A young doctor soon entered the room and stated that he realizes people may be in pain but there is no excuse to be rude to the nurse, I then explained that Suzy has RSD and is suffering as we speak and the nurse grabbed her arm and was determined to take her BP around her upper arm regardless, didn't say a word to her when grabbing her arm and had a bad attitude herself. I repeated that Suzy is in extreme pain and that if they have a wrist cuff they can get the BP that way. The young doctor (not the one we came to see) insisted that Suzy take the blood pressure around her arm or leave and that we have 10 minutes to think about it.

We left and was billed 600 dollars. I was speechless and never again will I ever sit there and not be more aggressive with twits ever again. :mad:

Hi,
 

Some University Hospitals may be good. But the U. of Colorado has a bad rep around here. We have to go 150 miles one way to get to it. From what others have told me about the departments they have seen including the cancer unit they didn't like it.

I have seen a TOS Dr., a Urolgogist, an Orthopedic Dr, 3 PM Drs, and a few others at the U of Co. and the only one that was willing to do what he should was the Orthopedic Dr. The others were jokes.

My caregiver and I filed a complaint against the last PM Dr. I saw and there was a girl on here a few years back and she was suing him for what he did to her.

To me University hospitals are just what they say they are a teaching and learning hospital and mostly we become their guinea pigs. I have several horror stories about the U of C.

I also had surgery at the U of L in Ky. and they were suppose to do a complete hysterectomy on me and I ended up having to have a second surgery a year later.

There might be some good ones out there but I think it might be that you just find a good Dr. in them.

Ada

i have to say that i have been to many places for treatment mayo being one of them and they just werent the right place for me.. as a kid with full body rsd just wasnt the right fit..

but where i go now is part of a unv. hospital. and there are some good and some not so good docs there too. and i think that it depends on the doc etc.. but my PM like alot is a not only a anesthesiologist he is also a neurosurgeon and does PM. he does have a resident program. but he doest allow them to do much of anything to me.. only one can and he has already finished all his training as a general surgeon adn went to plastics and changed his mind after doin it then wanted to do pain management..

but like i said there is alot of places that are good and bad period.. just have to find that one that fits you

carrie

I'm only one year into my "probable diagnosis." The doc I liked the best was at a small teaching hospital affililiated with Tufts that is limited with what it can offer. They've done 7 SGB for me.

The rest of the good docs I know are at my PCP office.

It's very discouraging. I honestly don't know where to go next. The docs and administrators I have come into contact with so far at the BI in Boston have been awful. It's such a bummer.

Looks like I will be soon looking for a new doc. I wonder what the average annual doc turnover rate for us RSDers is?

Have a nice evening, Sandy

The HMO system is frustrating at best. National health care will be worse (HMO run by the government).

Sandy, I wish the best for you!

The HMO system should be criminal. It's a farce and all its really done in the last thirty years is create a production line out of patients. Just like many crafts and trades have been manipulated these past 50 years using strict business models to maximize profits the same has been done in the medical field thru insurance companies. The big money is not generated thru quality so much as it is volume.

Leave it to Insurance companies to want to make everything, every skill, into a commodity!

Grrrrrr.

That is correct, commodity. I've been in the printing business for over 30 years and it is considered a commodity and it really isn't. 98% of everything we print is completely different from one another. Different counts, paper, sizes, inks, type of printing from letterpress, offset, digital toner, digital offset, variable data printing not to mention a thousand different bindery operations. Yet, it is treated as a commodity, like a roll of toilet paper and printers are failing in record numbers all over the US.

Rsd/crps
 

I have RSD/CRPS and have had it for 4 years and have been told there is nothing more that can be done for it. I have been rated 25% whole body disabled and I would think someone has more to say or do out there than what ive gone through with my treatment. Anyone have any ideas/comments or suggestions? Im in the midwest- so not here, I guess they are out of ideas. I dont want to live the rest of my life this way if i have a shot of not having to, who would (right!).