He seemed surprised that I asked and even more surprised when I said that did not sound like very good odds. And he was definitely less happy when I borught up infection rates, lead migrations, battery replacement, seven year outcomes, MRI's, etc.
I was actually surprised that he would go ahead and try to plan the surgery. Surely I sounded like a patient (mom) that was going to be trouble.

Spinal Cord Stimulators and CRPS-It's all about money. By the time the device failed they wouldn't give a rip if you would be "trouble" or not. You would just be politely, or impolitely referred elsewhere. They would have already made their money on the implantation.

So how is it that some pain programs are corrupt and others are not? (I am informed that the pain center at USC does not - as a matter of policy - implant SCS's in CRPS patients.) I suppose it happens the moment a physician pitches a "center" as a profit-center to his or her technically non-profit institution.

Any other thoughts?

Mike

It is all about the money. I think the SCS is the most useless if not the most harmful thing for RSD I have seen and because of peoples desperation to get better they can't think things out to the extent they need to before getting it done.
We have a pain Dr. in our area, very well known, he is know to push the SCS, Narcotics and his rehab center. I have met 4 people he has put the SCS in. All have them off or out. I've met several that are very addicted to Oxycontin because of him and his rehab center cost around 20,000 to attend for a month.
There are just certain Drs. that is all about the money and RSD seems to be a disease that draws them due to not enough known about it.
I did find out also that there are only 4 researches being done on RSD compared to hundreds on other illnesses.

Ada

I just wanted to let people know that there is a kind and capable doctor at UCLA. Dr. Joseph Prager is one of the leading specialists in CRPS/RSD and he is really, really sweet. He takes a lot of time for his patients. If you are up for traveling...and I considered Mayo, Johns Hopkins, etc. then you might want to try UCLA and Dr. Prager.

Dear SonshineEvie -

You're new here, and may not appreciate that at the top of every NT page there is a "Search" button, which you should always open at a new tab so as to not loose anything you are working on, etc. Believe me, there is a wealth of information in those posts.

Had you first searched the RSD and CRPS forum under either Mayo Clinic or Joshua Prager, you would have found scores/hundreds(?) of posts, and very few of them are complimentary.

I am a native of Rochester MN, and was able to secure an appointment with their leading peripheral neurologist on RSD/CRPS, who promptly blew me off because - some 8 months into this - I hadn't (yet) displayed enough of the "objective criteria" to confirm a Dx of CRPS, EVEN THOUGH I HAD GONE INTO A 2-WEEK REMISSION FOLLOWING A BILATERAL LSB, ROUGHLY ROUGHLY FIVE MONTHS AFTER DEVELOPING MY SYMPTOMS! (That and she was oblivious to odd developments in the pattern of my body-hair and nail growth.) Little did I know that at that time she was just about to publish a major paper on the incidence of CRPS in a population of 100,000 people (Olmsted Co., MN) based on an historical review of treating records from the Mayo Clinic and the Olmsted County Medical Group: a low-ball estimate that was later pilloried and generally discredited for its overly restrictive diagnostic criteria. That, and at least since the sixties, it has emerged under the influence of one neurologist in particular as a leading hawk against the use of opioids in people with non-malignant chronic pain, to the point that the centerpiece of its pain program is an out-patient program teaching pain patients essentially how to "grin and bear it." Small wonder that the same folks have been tight with the W/C industry and repeatedly testify as expert witnesses for defendants/insurance companies in litigation. And finally, at least in recent years, it hasn't exactly been a font of new research into the cause(s) of CRPS.

Don't get me wrong, I would trust (and have) trusted my life with the Mayo Clinic in so many areas. But pain management - and anesthesiology in general - are not necessarily among them.

And as to Dr. Prager, where I have lived in LA for many years, I saw him along the way as well. There are many things I could say about him, but "legend in his own mind" comes as close as I can to summing it up. Check out the comments on Dr. Prager in particular.

Personally, and I've made no bones about this, I think the best pain doctor in town - bar none - is Steven Richeimer, MD, Chief of Pain Medicine at USC and Director of the USC Pain Center. (A place which not incidentally accepts most medical insurance as payment in full.) Having had the privileged for being treated by a lot of great and caring physicians, Robert M. Schwartzman included, I believe that Dr. Richeimer, with his double residencies in psychiatry and anesthesiology, may well be one of the the finest combinations of technical brilliance, humor, compassion and utter lack of egotism in the medical profession today.

And to the south of LA, I've also heard very good things about Nancy L Sajben MD in La Jolla. If nothing else, her discussion of "Complex Regional Pain" (the link is on the right hand side of her homepage) should be required reading for all. For what it's worth . . .

And with that, welcome to the forum!

Mike

We will be headed to see Dr Sajben in May for 2 wks. I will be recording our progress for everyone who is interested.

Hi Betsykk,

I don't know anything about Nancy Sajben except I have been following her website for several years. Although she has a CRPS success story listed on her website, she only has one posted. I do know that it is quite costly to be treated by her.

Since you have some time prior to the May appointment have you considered trying tDCS. If it works you have saved yourself lots of money. If not, you will have not spent much to find out.

Just a thought!

I think the thing with Jh is that they use your mental health benefits so u have to have A clinical dx of depression or something. I have a friend who went thru their program and didngreat but she has a mental health hx.

Deb








Good for you. I wish more of us would do what you did. I have not heard of any one w/RSDgettng any real treatment there.

It is really ashame when patients have to experience such negativity with an MD. It also took be some time to find doctors to 1 correct my arm which I almost lost funtioning and 2 to deal with my RSD. If was just luck that my son had a friend who's father worked for the NBA, National Basketball Association, and he is the one who referred me to the Hosptial For Special Surgery. And when I tell you if I didn't get proper treatment at the exact time I was referred I would have lost functioning. As it was they, HSS, did not tihink I would get more then 45% back. But I did about to 90% and that's pushing it a little, returned to work, PT only, but it gets me out and keeps my skills up to date, and I at least feel I have my life back to a point.

Ballerina, I hope everyone reads your post because just because a person as the 2 letters MD next to there name does not mean they are doing there job right and looking out for a persons best interest, like they take an oath to do.

Thank you again and so sorry you had sucha bad experience. But thank you for sharing so we can all be aware.

Gabbycakes[/QUOTE]

I saw Dr. Raja several years ago when I had already had most treatments. He did 2 more sympathetic blocks with no success. He recommended a SCS, which I declined at the time. I didn't have any real issues with my appointments there.